The woman leaving the house to her husband in her will could do so under the terms of usufruct: he has the right to be there, but at his death the property reverts to the family or the trust that holds it. I have done the same with my will as I wouldn't want my husband to be deprived or in any turmoil or hardship, but my estate is earmarked for a greater good over the long term.
In some genetic diseases, people can inherit the disease, while others can be carriers, so the people who say if she doesn't have it means the children can't are not automatically correct. PKD for example has this kind of complex genetics. (Actually even more complex than that).
1
I think LW1 has gone past Go and zipped around the reasoning board twice without dealing with the one item that is truly LW1'S to decide: whether they tell family openly the name of the fatal disease they are suffering from. That is 100% LW1's decision. Be open about what is going on with you. Let everyone else do their own research and draw their own conclusions. You have no right to tell siblings to be tested. Siblings have no right to tell you to keep your disease a secret. Don't educate anyone in the family about anything but what is happening to you and your own genetics. Their genetics are their business and they will decide what they want to know and when they want to know it. And that part is entirely NOT your business or decision.
You don't actually hold the fate of the family in your hands. You only hold the information about your own situation.
3
LW1: The trouble with not sharing your information with nieces and nephews is that they are likely to find out anyway from their cousins (your children) who do know. Unless they too have been sworn to secrecy.
L
Fatal disease. Neither the writer nor the response seemed to weigh the psychological impact of being informed one may have, or pass on an incurable fatal disease. It is not a merely matter of some medical logic. For many this knowledge could be utterly shattering, and misery inducing. The mere thought of one's own death, likely involving prolonged suffering, can be debilitating, inducing profound depression. It could ruin their lives, not save them. Some become so obsessed by such fears of the possibility of distant death that they are unable to enjoy their current health and life. Why keep living? Why go to college? Why save money? Why have children? Perhaps one should take drugs or drink until oblivious? Surely all of us can imagine such irrational reactions to being told one might have an incurable fatal disease. I personally would not do as the sister, and knowingly refuse to be tested. However, do not her children have the right to a blissful life of ignorance? Their entire personalities could be changed by being informed of a possible death sentence in agony! Who is she to decide? If they become ill then they will deal with it but they will have lived some of their lives without fearfully looking up to the noose.
3
@AR Since there are treatments that can forestall the noose, or make the time up toward it better (hard to say which from this letter), there is a very, very good reason to be aware of the disease.
1
Sidebar: In my next life, I would like to be able to authentically own the phrase “ancestral family home,” as in “I recently asked my sister to take an extended vacation to our ancestral family home.” The closest thing I have to that in my current life was torn down in the 1950s via eminent domain to make way for the Brooklyn Queens Expressway.
9
Fatal illness......how old are your sister's children?? Don't tell them about this until they are 18, when they are legally able to make medical decisions for themselves.
Telling a 12 year old will only cause tremendous anxiety and stress in that home, because there is nothing the child can do about getting tested, and a kid does not need to know that he has an increased chance of dying in his 40's.
6
LW1: If the sister carries the gene, each child's chance of inheriting is 50%. If the sister does not carry the gene, then she cannot pass it on to the children. Any adult relative can undergo testing, and therefore the children can choose this for themselves (much easier if they are adults). It is common to use what is called "dear family" letter which details how to obtain genetic testing. This letter can be shared with the children and they can choose.
3
Fatal illness.
The patient’s concern is for her sister’s children.
Her sister may not want to share her own health information with her children but it no way does it prevent their aunt from sharing it with them.
She can explain it is a genetic disease.
Without mentioning their mother, but they will of course ask, you have done your duty.
Similarly, having a climate change denier in the White House has not prevented natural disasters that have happened as a a result of scientific knowledge.
You could also tell yours sister’s children that the earth is round and not flat as their mother might have told them.
3
LW1
You can tell your sister’s children about your disease, and the chances that their cousins have of getting it.
You can tell them about genetic testing.
Your question, however, has less to do with caring about your nephews/nieces than about your sister’s good will and understandably her fear.
I am quite sure you know there is a right thing to do and what it is.
I am sorry the ethicist chose to meander into scientific explanations when, 1. He had no information about your personal case and 2. Is not relevant to your question or concern, unless you needed it to justify your decision.
I am suspicious of the writer of letter no. 2.
I am having difficulty in understanding this family historical property that she and her sister own in part (who and how many are the other owners) and their brother not at all.
Also, what’s to prevent the husband/widower from selling it to the letter writer sister, unless specifically forbidden by the future deceased?
Simply, I don’t believe the situation is bring presented truthfully.
The property sounds like a time share.
2
"Given that your sister’s chances are 50 percent (and that it’s vanishingly unlikely that her partner has the gene), her children’s chances are 25 percent."
While such math has its place in statistical assessments of the population as a whole, it should not be used to cloud the ethics of the specific scenario outlined by the LW. In the theoretical case you present, downstream considerations are immaterial, while the proximal considerations are paramount. What kind of statistician would completely ignore a proffered likelihood when an immediate verification can either DOUBLE the likelihood of a second generation individual or completely eliminate it? Your blithe reliance on this convenient ignoring of facts immediately determinable is - frankly - inexcusable, if not intellectually sickening.
"Never let your sense of morals get in the way of doing what's right." Isaac Asimov
8
There are a few challenges with the Ethicist's answer here. 1. If this is an autosomal dominant disorder, the nieces and nephews only obliquely have a 25% chance of inheriting the disorder. They have 0% chance if mom is negative (assuming dad is unaffected) or a 50% chance if mom is positive. 2. In an ethics column, I was surprised to read no mention of the impact of DNA status on health insurance, employer bias, future relationship decisions and a host of other concerns. Personally I believe I would choose to be tested in this situation, but there are very substantial implications of having a positive test or reporting to a doctor that a parent/aunt/uncle has this DNA status. Many life insurance policies for example would refuse to pay for a death related to this disorder if there was a positive family history.
11
Is LW1 trying to keep her disease private from the general public? I would think simply posting on Facebook would have the desired impact of eventually getting back to the children without specifically informing them. If the children are still young, the idea of how this would impact their own children is still a ways away.
I can imagine that the sister doesn't want to know for herself, and also is terrified of finding out if she has passed it on to her own children. She really should get herself tested, and therefore find out if it is even a concern for the kids.
4
Inherited genetic diseases can be utterly random. America’s best known carrier of Huntington’s, Woody Guthrie, had two daughters by his first wife and both died prematurely from the disease. But of Guthrie’s five children by his second wife, none have become symptomatic and the youngest is 66 this year. It makes me wonder if the genetic makeup of the non-carrier parent can affect transmission.
@Jack Purdy There are some disorders where other genes can impact expression of disease genes. However, that is not the case for Huntington's Disease. Woody's children had a 50/50 chance of inheriting. Just like some families of 5 children are all of one gender, eggs and sperm don't have memories to know what happened in prior conceptions and the risk is 50/50 regardless of what others have inherited. However, Huntington's Disease tends to have earlier onset when you inherit it from your father (the number of repeats in the gene seems to increase in sperm but not eggs).
7
Survived pancreatic cancer more than a decade ago. Recently, Memorial Sloan Kettering offered me genetic screening at no charge. An aberrant gene was found, which affects females more than males.
I shared the results with my relatives. What they do with the results is up to them. But at least they're now aware of the possible implications.
10
I feel for LW2. I think it would be helpful if LW2 could understand her sister's decision--and I have a feeling she hasn't seemed like a safe person for her sister to share with.
It's easy for me to say because it's not my home, but I would prioritize the relationship with the sister. Even things that you love are just things; the house could be destroyed by fire or flood.
Maybe instead of seeing your brother-in-law when you look at your sister now, you could look at your brother-in-law and see her?
17
This week's column is weaker than most, and perhaps more gentle than it should have been given the views of the people posing the questions.
With respect to the first question, the ailing sibling needs to butt out of her sister's affairs. It is terrible that she is ill, and the disease sounds tragic. But intervening to tell the sister's children would not be appropriate. It is not the questioner's decision, and the person posing the question does not know the sister's children as well as their mother does.
For the second question, the ancestral home is jointly owned by the two sisters. The sister's share belongs to her. Period. She can do what she likes with it, and is under no obligation to leave it to the questioner in her will. We don't know how much it's worth, or what the rest of the sister's estate is worth for that matter. For all we know, the ancestral home is a huge percentage of the value of the whole. And does the will of the person asking the question leave the home to the sister? If the answer to this is no, it also answers the question posed to the Ethicist.
4
@Barbara8101 Your advice is weak on both scores, but especially the first.
She has information that could protect someone's children.
Beginning and end of story.
17
@Barbara8101 Your conclusion on the inherited disease is fatalistic. How many relatives and generations would you condemn to early death? I have an inherited crippling, but not fatal, rare disease. I found out about it in my 40s and used fertility assistance to stop the passage of this disorder. My sister, who became pregnant before this was known, passed on a physical and cognitive disorder to another generation. In his early 20s, neurologists advised him not to have children. What's the future of your mindset look like?
11
@ Barbara8101 Philadelphia PA
I find the first question too gruesome to comment. As to the inheritance of ancestral abode, can one of the heirs sell her part to an outsider? A way to keep the property in the family is to place it in a trust, where disposition of the individual shares is very strictly controlled.
3
I also have inherited a terrible terminal disease, but my brother and sister, my cousin, my children all were on the same page! we absolutely had to find out who had the gene that makes us sick or carriers. I have two grandchildren that inherited the disease and I never want to see another case in our family. Luckily not all of our family has the gene so they are completely safe. Think of all the suffering you can avoid by knowing what you have in your genes!
23
If, indeed, the chance of any of your nieces and nephews is 25%, tell your sister that either she tells her children, or you will.
11
@Bailey T. Dog
See RedRaider2582 above. The author’s statistics are misleading. The sister who doesn’t want to know has a 50% chance of inheriting the fatal gene. If she is positive, her children also have a 50% chance. If she is negative, her children have 0 chance.
It’s easy for you to offer your opinion when you’re on the outside looking in. Facing a fatal disease, and likely with significant suffering, might make you change your mind if it was you and not just your opinion.
3
Judge John Hodgman is much better. Questions are clear, not labored and his responses are direct, professional and ethical, rather than these lectures that are way too long.
16
Keep in mind, folks, that the sister seems to love her husband (who, scare quotes aside, seems to be taking good care of her) and we don't know the reason for the LW's dislike. It could be legitimate or it might be petty. Let's see. "Sister, you're selfish and so gimme the house or I'll hate you when you gone." I vote for petty.
11
Re letter 2, aren't there some limits on disinheriting a spouse? I think you can disinherit adult children at will, but not small children, and there are limits I think on disinheriting a spouse, which is what giving away the real estate would be.
It's unfortunate when inheritance patterns split property into the hands of opponents, but it is just what happens and can't be helped. You have houses owned by two or three inheritors all the time where some want to sell, some want to keep eg for rental. There's no prefab answer.
4
@Bruce Quinn
Each state has its own laws of succession, and real estate devolves according to the law of the state in which it is located, even if the deceased owner did not reside there.
4
@Bruce Quinn It also depends on how the property is held. If it is as joint tenants then when one tenant dies the remaining tenant automatically inherits. If the property is held as tenants in common the surviving tenant does not inherit; Rather the property is transfered via the will. So if LW 2 wants property to become 100% hers at death of sister, the property should be held as joint tenants.
1
LW1 can always inform all of the family about his/her/their own illness and make a choice, if with young children, to let them ask their own questions, or with older children, to let them know what the likely cause is. With LW2, I can appreciate the difficulty presented when one loves and cherishes the sibling but loathes the spouse. Still, it's pretty unbelievable to be angry about giving a spouse primacy in care giving. I agree with the others who have suggested that much of LW2's pain is coming from something other than property division and concern for the sibling.
8
I like the answer to letter 2: examine your own feelings and intentions before you create wounds that may never heal.
Letter 1 does depend on the age of the children. But in any case, even if they are not adults, they can be told that the letter writer is ill and with what. That is his to tell. And he probably should. He can also answer questions about what that means if they ask, and not lecture them with his expectations about what they should do with the information.
7
"Ancestral home". I wonder how many generations it's been in the family? It's a vague term. When my parents died, some of their friends asked if I was going to live in the "family home". What a weird concept to me. I live in LA and my parents long ago moved to Monterey. It wasn't a "family home". They bought it ten years before their death.
My mother's family lived in a three-story house in Wayne, Pennsylvania, for a few generations. It was long ago sold. My parents went back on vacation and asked the current owners if they could come in and see it. The owners were very gracious and said sure.
My father and his sister both inherited their parent's home in the country. My father had no intention of moving there, but his sister really wanted to. She bought him out.
Houses and properties are material things. If it's bringing grief, sell and move on. Live your life without this bitterness building before anything has even happened.
What people forget is they, too, will die some day. Will they carry this bitterness to their grave? Will they regret the amount of energy spent on something so tangible?
When the sister dies, the surviving sister should ask the brother-in-law to buy her out. And if he won't, she can buy him out. It's estate law 101.
15
LW1: Appiah is a doctor of philosophy. He knows next to nothing about genetics or medicine. Consult a human geneticist, perhaps the physician who has been involved in your diagnosis and care. You have not provided sufficient information here to obtain an informed opinion, even if Appiah had appropriate education, training and experience to opine.
19
@TG You have no idea of what he does or doesn't know about genetics. He certainly seemed knowledgeable here. Of course, an expert consult is in order, and maybe a 2nd opinion, too.
3
It's situations such as this that make me happy I was an only child.
10
My aunt went around my mother to inform us about her inherited deadly gene. I'm grateful that she did, because I’ve been able to do pre-implantation genetic diagnosis for my children and have had life-saving screening.
I resent my mother for not informing us. It was selfish and irresponsible.
Do it. It’s not just about your sister.
58
LW1: We went through something similar in my family. A few relatives had breast cancer over the years, well before the advent of genetic testing. Later, a cousin tested positive for BRCA1. One of her dying deeds was to send a letter sharing test results with every family member, so each could make their own decision about gene testing. Some did, some didn't. I imagine that for minors this letter could be arranged to be delivered when the minor turns 18. In sending the letter, my cousin was literally and nobly trying to save our lives. There is no ethical dilemma to me. Give family the information so they can make informed choices.
36
#1 Example. A lot depends on the age of the children. Minor children are off limits. Adult children can have the subject broached during a normal conversation where the question is asked 'if you knew there were an inherited disease in the family would you ever want to know?'. or 'a friend just found out so many in her family have adopted because of a reproductive issue that runs in her family and she wished she had known it was due to an inherited disease before she married because she and her husband wanted to have children so bad'. There are many ways of discussing a subject without
We have one child, who was born type 1 diabetic (juvenile diabetes) and we not only opted not to have more children after testing at six months showed we risked having another diabetic child but our child was raised knowing the risk came from my side of the family. So when he married his awesome wife they opted to have no children. He adopted her two young children. Otherwise they would have adopted.
21
As usual, the comments show so many ways of seeing and feeling. I always have my horizons expanded.
But, as usual, I come away saddened in knowing that there are more than a few who believe they "know" the "proper" answer.
I believe that this column and its attendant comments tell us that we should be very wary in trying to make people fit into molds of our making. There is no mold that is good for everyone.
25
In l to the second family - I’ve noticed that some responses focus on the ‘ancestral home’ as though it might be a beach house or a pretentious word.we don’t know where this family came from, if they were immigrants, and the meaning of a particular geographical location to them. Or how much trauma there was when they were children. It’s a difficult situation, for sure, but there may be more going on than we know.
10
LW2: Seek therapy, not an ethicist. Your concern about “hating her” after she dies are your feelings, and managing them is your work to do, not hers. She’s got her hands full with dying. Quotation marks around “he takes care of her” suggests that something is getting in the way of your compassion. Perhaps this is your grief talking. In which case, therapy. The ancestral home is a red herring. Work through your feelings now so that you have no regrets later, after she’s gone.
45
@TG
Sister’s feelings don’t need working through.
She wants the property. She hates her brother in law.
She will hate her sister if she leaves her portion to her husband.
Very clear.
2
LW1: if her sister does develop the disease, it ups her children's chances of also becoming sick to 50%. How are they going to feel if they are left in the dark? Surely your illness is not a secret so talking to them about this situation is not out of line? Or does your sister also expect you to lie to her children about what is wrong with you?
29
LW1:
Depending on your and your sister's children's ages (a crucial factor, IMO 16 or older), perhaps leave it to the most tactful one of your children to talk to them about what you are going through? Presumably yours know, and they have (had) to grapple with the same question: to want to know or not. Your children's experience and sharing of struggle could be invaluable to your nieces and nephews. This will put your and her children on equal footing - they're all in the same boat. At this point the ice will have been broken more gently. Once there, have both your families get together with a family/genetic counsellor.
My heart goes out to you and your family, especially to your struggling sister.
LW2:
"Ancestral homes?" #firstworldproblem
Sister dying? Real problem
This letter writer has little credibility as there are way too many omissions.
10
I always feel disappointed after reading The Ethicist these days. I think it’s become more of an advice column than an exploration of ethics.
For example, after reading today’s first question, about sharing a genetic risk with children, I settled in to read a thoughtful discussion of individual self-determination, boundaries of parental rights, perhaps connections to pro-choice/anti-choice issues, etc. Instead it was mostly about percent likelihood of heritability and the presentation of possible treatments that may emerge in the future. That is useful analysis of a situation and led to practical advice. But those are not ethical considerations.
Similarly, in response to today’s second question, about passing along a family home, I hoped to read discussion about: What is a legacy? How far does the word “family” or “ancestry” extend? What are grief and remembrance made of? instead it’s a lot of maybe your sister thinks this or that, and it ends with maybe you’re not so easy to be around either. Important considerations, but ones that could have been offered by a therapist or a good friend.
I miss the days when this column avoided getting bogged down in the details of a situation and instead dove deep into the ethical issues at play; laying them out for consideration, and then leaving the final verdict to the superegos of the questioner and the readers.
47
I always enjoy this column and thank Professor Appiah for writing it.
10
@Donald Champagne
Me too because it illustrates, should another illustration be needed, how idiotic people can be.
3
What is the best way for LW2 to handle "the difficult situation" of her unwillingness to accept her dying sister's decisions? Accept them, don't raise them w/her again, & leave the other family members out of it.
LW2 sees her dysfunctional childhood family as one populated w/alliances, resentments, and even posthumous hate. Her sister, however, is facing death & has chosen her protective, very good husband who is taking very good care of her as the person w/whom she wants to spend her limited time with. No wonder she brought him along on the trip as a buffer from LW2's selfish, entitled badgering. Let the woman die in peace.
16
#1. Yes...Yes...Yes...
Tomi Um's illustration says it all....
Shout it to the Gods....
Its about Life v Death and...
Its the Right and Just thing to do....
Best Wishes
#2. She does have the right to leave it to her husband,
however, Talk to your sister again in Private.....
Prepare a letter for her to read and ponder after you speak
with her, so she has the ability to reflect on your words....
Explain, how the home means so much to the family
memories and encourage her again to sell you her share
before she passes.
Without question the husband will hold this over your heads
and you will all end up in litigation after her passing....
Prevent this now from happening, persistence pays off....
2
In the 2nd case it seems to me that the sister is letting her husband make all the decisions & she is just being a 'good little wifie' -AND I suspect hubbie is seeing lots of lovely cash in the old family property that he is not going to just let go !!! This is the reason that leaving a property to more than one person is asking for trouble between them later. Same thing happened to my sister's husband's country place in Portugal - currently 2 people own it, brother & sister, with 2 entirely different attitudes to what should be done with it - one wants to keep the old country feel, the other would like to modernize it, they constantly argue over it, and one side is totally determined to try & take over total control...the value of this property is substantial & 2 signatures are needed to sell it -which can never happen as it stands. It's an impossible situation !
5
@vcragain Legally one can threaten to force a sale if it comes to it. Been there in Switzerland with the eventual result of three buying out the other two's shares in the property.
2
@vcragain Agreed. Houses have to be maintained and the taxes paid yearly. Will the widower agree to share those costs? I'm thinking not. And he could block the sale of the property. If the taxes aren't paid, it will be seized. If it is not maintained, the roof will leak and ruin the whole place. What a mess.
2
@Laraine Why assume the worst about the widower? The sister who will survive is behaving badly toward her dying sister.
3
Understandably, LW2 never wants to be forced into negotiations with a despised brother-in-law over who uses the “ancestral home” for holidays, who redecorates, how the property is shared or used by extended family, etc., not to mention the aggravation of having to ask one’s sworn enemy for his share of property taxes. What if both grieving LW and grieving husband plan to retreat to the home after the funeral? Yikes!
Presumably, the sister and husband have spent time there and have their own memories that sister wants to honor by willing her legacy to her husband. Or maybe the husband just likes the place and wants to retain access to it, even if he ultimately remarries or estranges from LW. It’s possible husband has suggested to his dying wife that he buy-out LW and own the property outright. LW shouldn’t assume her sister has told her everything. LW doesn’t tell us whether she or the sister have children which might be further motivation for sister to want her husband to inherit.
What LW should do preemptively is seek expert legal counsel, not to plan to fight but rather to get an idea of what a battlefield might look like if fight she must. What is most strange is LW’s worry that she may end up “hating” her sister with whom she describes being “extraordinarily close” over what is really just a property dispute. Her sister hasn’t wronged LW by showing allegiance to her husband, so what is really motivating the vitriol?
12
@hey nineteen , the whole story is strange. Past and present sibling alliances against another sibling, focus on what “ancestors” are claimed to desire rather than a dying sister’s desires, the unwavering venality of the LW’s concern... indeed she apparently will “hate” her late sister once gone if she herself is not pleased with the decisions the sister has every right to make. No, this is not a death scene from Little Women, but something less savory, much less.
2
Re LW2: "Ancestral home" suggests more attachment on the LW's part than a mere piece of property warrants. Put your sister ahead of the house!
6
I'm not an attorney, but the second writer may be wise to consult one. As I understand it, if the house is held in joint tenancy, the surviving tenant will gain full ownership. Only if it is tenancy in common can one tenant will her half to a third party, even her husband.
Hope that helps. The sister sounds very emotionally tone-deaf. It's a shame.
10
@Vic I hope you mean the LW in that last line, and not a dying woman whose sister is after her for property and hates her husband.
3
@Vic
An attorney might have noticed that the sisters are not the only shareholders of this time share, I mean historically ancestral domicile.
1
Due to family history, I had the BRCA tests - I remember at the time the geneticist's telling me "the worst part for you won't be if you have it - it will be having to wait until your own daughter is 21 for her to have the test done." (side note: Fortunately, I am negative so she doesn't need to have the test herself). I am bewildered by the asker's sister's decision. Is it some kind of superstition, like this genetic illness won't notice her and her descendants if she remains unobtrusive? The only thing that can be worse for a parent when their child gets ill is if they could have done something to save his/her life (hello, anti-vaxxers) but deliberately chose not to act. Tell your sister's kids you were struck by a genetic illness and stress that it's a gene pool shared by yourself and their mother. No one wants to hear threatening news, but if they ever find out that the people who are supposed to protect and love them let them contract this illness, the betrayal they will feel then would be infinitely worse.
10
@Elizabeth Yes, I would be devastated to learn I have a fatal disease. I would be doubly devastated to learn my child had it. I would be triply devastated to learn my grandchild had it. Knowledge is power in this case, and I would be furious if this information was withheld from me.
9
I think The Ethicist is a very confusing "guide." I don't see the basis for his ethical advice. It seems to be all over the place, and often looks suspiciously like he came to an instinctual conclusion and then did a work around to justify it. The only advantage I see is that he points to some (not all) of the different things to consider.
5
In response to reading the first letter, I agree with the ethicist -adult family members should know all the facts when a family member is given a diagnosis of a terminal and inherited disease. My husband has been living with ALS for six years. He has the familial SOD1 mutation- passed on from his mother. We told our then -19 and 27 year old daughters this difficult news during a long walk in- the- woods. At first , I too, didn’t want them to know the truth-which meant a 50 percent change that either one of them could inherit ALS . Our daughters want and need to be treated as adults and to make their own decisions about their health choices.
The SOD1 gene is the longest studied of the ALS genetic mutations. My husband was the first human to receive the antisense drug targeting his SOD1 protein mutation. The trial is now in its 3rd phase and the data is showing -that the drug is decreasing the progression of the SOD1 protein. We feel grateful to be a part of the research and this clinical trial searching for a viable treatment for SOD1 patients.
The other siblings in his family do not want the adult cousins to know about the inherited component of the SOD1 gene. This decision has caused a sharp wedge between us. Not sharing this knowledge of a familial gene -is wrong. Isn’t it possible- in knowing this truth - however difficult- a person can accept it and gain the grit, resilience and growth needed to survive the turbulence of life? Secrets will not find a cure for ALS.
26
@CMG
I couldn't agree with you more. Both my sister and I inherited a form of "terminal" leukemia from our father, who was never told what he had (neither were us kids). In those days, doctors and spouses could make such choices for patients. My mother thought telling him would destroy his chances for happiness for the time he had left, which turned out to be 8 yrs! I've lived with the disease for 22 yrs now ... and except for the first few months and a few days here and there, I've had a happy life and adjusted to it, even to the treatments. It's been the same for my sister. I often think of how my father missed the chance to lead a life that included knowing why he was so sick, and how we could have been a much better family, not one living with a terrible lie. I know we could have all learned the lesson I've been taught by my years living with this disease ... that fear, no matter how strong it may come on, is only temporary, and need not rule your life.
18
@CMG Maybe I'm missing something, but does your husband keep his disease a secret from all the relatives? I wouldn't seek out the adult nieces and nephews to tell them, but I certainly wouldn't agree to keep my own genetic disease a secret. That would be a bizarre and unreasonable request from the siblings.
My older sister was diagnosed with Huntington’s Disease 22 years ago when she was 49 and has since passed away. We were unaware of this family history since my Dad died at a young age and he was the carrier. I was 40 yrs old, single and decided to be tested ASAP in order to be able to plan for the future. Thankfully I was negative. My younger sister had kids and was scared to death. She put off testing for many years and asked us not to speak about it in front of them. When they asked what was wrong with their Aunt she told them it was a stroke. This lie offended me but I went along with it. Her kids were young at the time but as years passed they still weren’t told. She was finally tested 10 years ago and is also negative. She came clean with her kids 2 of whom were angry that they could have died and didn’t know. My oldest sister’s grown kids have chosen not to be tested. They are both single and one of them had a long term relationship end because she would not agree to be tested. They say they don’t want to live their lives differently and they will know soon enough if they have inherited the gene. I try to be hopeful that they too will be negative. I see all sides to this heartbreaking dilemma depending where you are in your life. As opposed as I was to going along with the lie about my sister’s health it was not my place to speak up. I think the writer needs to respect her sister’s wishes with regards to her kids. And I hope for the best for them all.
1
The author has been "struck by a fatal disease" which surely has manifested itself in apparent ways, no matter how mild at this point. Surely she should be able to speak freely to her sister's children about her symptoms and their genetic nature, if they or even just the eldest, are adults or near adults. She should answer any questions asked in terms only of herself. If asked about their own risk she should simply say, "that's a medical question. Ask you mother."
Such a conversation places no "blame" on her sister for refusing to be tested while alerting her sister's children to possible risk.
13
As someone who has a genetic disease that is fatal, I feel for the first person. I also have children and didn’t find out about my disease until after my kids were born. So now they have a 50/50 chance. Since I’m also now divorced my ex does not believe that I have this disease ( I have survived 5 cancers, chemo, 16 surgeries, endless procedures but he’s really a smart one I’m faking it) and has not had the kids 19, and 16 tested. The genetic mess up could end if they in the future decide to go on and have kids with their husband or wife and have In vitro. I was up front with my family ie: brothers and my nephews to be tested they all chose not to. I can’t force them. They see what I have gone through.
I wish the person who wrote that the best.
14
It is unfortunate that the letter writer cares more about a pile of rock and glass than she does someone else’s equally valid feelings, although the tendency of being human is an innate down-scaling of other people’s feelings; and she had the right to be human as well as her sister and her brother in law. Also, it is hard to share.
7
Regarding LW1:
Although the letter writer's concern is natural and her own situation deserving of sympathy, we don't really have sufficient information to answer his/her question helpfully. How old are the nieces/nephews involved? Old enough to be told? (The sister's decision not to be tested is clearly her own business.) What about the role of the children's father, if he is present--what are his role and his responsibility?
Obviously the primary responsibility for dealing with the children's situation rests with their parent(s). To blackmail the mother into telling her kids by threatening to tell them him/herself if she doesn't is horrendous. Is it not possible for the siblings (and the father of the children, if present) to discuss this, possibly with a counselor?
(And, as other readers have remarked, the children's chances are either 50% or 0%--not 25%.)
2
It's possible that not everyone thinks that embryo screening for a genetic disorder is a good thing. Maybe the sister, consciously or not, just feels that what happens is what happens with reproduction. We are not all perfect. Some people will have a fatal genetic disorder.
Relatively recently many types of genetic screening--not all as high tech as embryo screening which would involve an Invitro fertilization procedure--have been available. And yet, there are many people who choose not to have an amniocentesis or polymerase chain reaction procedure, etc. or even an ultrasound. A child with a genetic disorder is not necessarily something to be discarded. Would you discard a friend who came down with a disease later in life?
I would advise this patient to let her sister make her own choices about what she shares with her children: after all, it's the aunt who is ill, not this mother.
5
@lucky13
I believe you miss the point lucky13.
It’s not how effective testing or treatment is.
That conversation can only come after the information of being closely related to someone who is suffering from a fatal genetic disease.
Making this into a right to life argument is weird, to say the least.
1
Regarding the second husband, there is a good chance that her husband is pressuring her to make this decision in his favor. If she is sick, she likely cannot face having to displease her husband and end his support for her. I am just now extracting myself from such a marriage and know that often a spouse, most frequently the woman, will state that a decision is her own when it is actually the result of being pressured by her husband. She may not even recognize this is happening. I don't think there's any chance she will change her mind due to the circumstances.
17
@Ali Litts
I’ve been on juries with people with your kind of reasoning.
I think he married her and exposed his wife to some fatal toxin in order to inherit this valuable piece of family property owned by her sister, but not her brother, and countless others.
Guilty as charged!
1
I am sorry for LW2 that she is facing the imminent loss of her sister - and the prospect of a very lonely future given the state of her relationships with the rest of the family. However, her concern seems to be limited to how she herself is affected by her sister's illness and impending death. She needs to examine her priorities. I say, now that she has expressed her preferences to her sister, she should accept her sister's decision and respect her wishes, as well as her completely understandable choice to share with her husband whatever time she has left.
16
I am a great believer in the miracle of modern medical technology.
I have been reading about a new Crispr technique that could fix almost all genetic diseases. Evidently a less error-prone DNA editing method could correct many more harmful mutations than was previously possible.
This miraculous scientific breakthrough ought to remove any ethical dilemma responsibility, not when you have near certainty of Crispr treatment success.
One ought to be frank about any genetic disorder to the family members when you have modern science remedy available.
“Cas9 makes nearby breaks on each DNA strand, cutting the DNA entirely. These tools can disrupt target genes at a specific location and then make it possible to add new sequences through recombination of new DNA into the site, directed by the cell itself”.
6
@N.G Krishnan While Crispr could potentially remedy a genetic disease in the future, one has to know to get tested, and have the resources to pay for the procedure. Or in your magical world where genetic flaws are easily snipped away, has the access to healthcare also miraculously been resolved as well.
@N.G Krishnan https://www.sciencedaily.com/releases/2019/10/191021124511.htm New CRISPR genome editing system offers a wide range of versatility in human cells
'Prime editing' combines two key proteins and a new RNA to make targeted insertions, deletions, and all possible single-letter changes in the DNA of human cells : MIT Harvard.
The probabilities for the grandchildren are off
Their chances are not 25% except in the most abstract terms
If their mother does have it their chances rise to 50%
If their mother doesn’t have it their chances are nil
Since one of the two conditions is true and the in between is actually not true , I think it is false comfort to pin their chances at 25%
If it were my sister I would first appeal to my sister about her children’s need to know and second Tell my sister what I am going to do and give her one last chance to do the right thing
But I kind of don’t understand how this scenario is possible
If the grandfather has the disease how come the grandchildren can’t put two and two together
22
@Dani Weber I wonder how old the sister's children are: Did they know their grandfather? Were they old enough at the time of his illness to understand what he had? Are they old enough now to be told this?
Re the first letter, and apologies if I have missed anything, but can't you simply reveal the fact that you have the inheritable disease to family members and, in discussing how it is inherited, etc it should be plainly obvious to all (including the nieces and nephews) that they could have the mutation and should be tested. The only issue I would see with that approach is that the children in question are not of legal age, in which case I think that you then need to defer to the parent of the children.
38
Exactly. Either that or the kids will likely ask her about it when the physical manifestations sadly become evident. Or it would be easier to start a discussion.
1
LW1 makes no reference to the ages of her nieces/nephews.
Are they a couple of young children or are they in their 20's and starting families? Their ages make all the difference in what LW1 should tell them.
46
On LW 1: who says the cousins aren't talking about it among themselves?
8
@PrairieFlax Who says they are?
@Pam Who says they aren't?
re LW2: "... our ancestral family home, which is for the most part owned by her and me. "
What does that mean, "for the most part owned by her and me." Who owns the other part, maybe the brother? Or is there still a mortgage? If the co-owners don't have the right of survivorship then the sister has the right to leave her share to whomever she wants. That new co-owner will also inherit obligations of co-ownership, such as taxes and repairs, and maybe mortgage payments. You surely don't want to initiate a discussion about this as your sister lay dying. Afterwards, when you know for sure how she has left her ownership, you need to have a full and frank discussion with your brother in law. Maybe after you have consulted a real estate attorney.
32
I wouldn’t tell your sisters children about _their risk_ per se. But you can definitely tell them - and anyone else you choose - about _your_ diagnosis ... which, by the way, I’m quite sure is Huntington Disease given your description of its fatality and it’s inheritance pattern. A quick Google search on their part ( if they so choose) will inform them of their risk ... and they can then proceed with testing of themselves if they wish.
16
@GBR This is a terrifying diagnosis. I'm concerned about young adults? or children? "googling" and being overwhelmed. They need support if they are to learn of this which I think they should.
6
@WF Sure they do need support. So who is there to provide that support? The guy who has the disease.
He should inform them of his diagnosis. That is certainly his right. He should also tell them that they may wish to learn more about it and whether it might affect them. And that he is available for a further discussion if they wish.
That will be both sufficient and less questionable than his telling them to get tested. That they can figure out for themselves.
8
@WF this is exactly why my sister didn’t want her kids to know - at least not until she was tested. She was afraid they’d google.
1
I think that the option to LW 1, ethically and skillfully, is to be honest with the entire family (including nieces and nephews) that you have this heritable disease, WHY you have this disease, and let the kids investigate as they choose to. You can discuss what YOU've done in terms of info, treatment, kids, etc. If the treatment issue can wait until childbearing age, you could wait, but if necessary you should do this right away. This is your sister, it is a true ethical crisis. I appreciate the difficulties. Anything you do will have consequences. The question is, which consequence could you feel right living with?
LW 2: Let go of your ego and anger and support your dying sister without resentment. She needs your complete love and support. How you feel about your brother-in-law does not matter at all. It isn't your business to judge their relationship. You can deal with him and your "ancestral home" later. Things change. Anything else is, in fact, simple selfishness.
26
@jlb A lot depends on how old LW1's nieces/nephews are!
1
LW1: Of course your sister's children need to know. It would be best if their mother told them, in part because your disclosure will inevitably imply that their mother is also at risk. So, I would urge your sister to tell her children so that they can make their own informed life and child bearing decisions, but explain that if she does not you will. This assumes that your sister's children are adults, if they are not you may have to wait until they turn 18.
LW2: You need to recognize that the house is as much your sister's as it is yours, and that it is normal and predictable that she would want to leave it to her husband -- very likely the individual she loves most, with feelings that have probably been enhanced during her illness.
21
To LW2 -- My husband died three weeks ago. In the few weeks leading up to his passing, and in the aftermath, I made choices to ready the house for his return while he was in a nursing home -- and regret the time away from him, as he never did return home. I was focused on activity that in retrospect seems trivial, partly to retreat from the hurt of some painful words we had, rather than on simply loving him and making the best of the very limited time we didn't realize was left to us. Please, please consider that the house is merely a thing, although I know it has meant a lot to your past, while your love and history with your sister is the truly enduring, precious experience that you will wish you could cherish untainted. Spending coin of the spirit in enmity toward her husband may rob you of being able to hold her close while she needs your love the most, and may be a source of bitter regret for you for a long time to come. In spite of a close and loving marriage, I still have regrets even for the small decisions that kept me from simply pouring my love into my husband in his last few weeks. My sisterly heart goes out to you in your struggle.
132
@human bean Beautifully stated. In discussions with friends about regret after a loved one passes, it seems to be a common and painful feeling. Either we just didn’t know and didn’t have enough time to share love and resolve conflict, or we feel we didn’t do a good enough job of caring for the person...and it can really linger. I say this for you, @human bean, as well as for LW2, because perhaps we always wish for just a little more time when we lose someone. Hard words and difficult feelings are often an inevitable consequence of both illness and intimacy, but so are shared love and experiences. LW2 has an opportunity to make the most of that love and treasured memories at the ancestral home with their sister. Wrangling about ownership, however significant it may seem at present, pales in comparison to that. The statement about later hating your sister is a strong one. And if that’s where your emotions take you, that may be the biggest regret of all. It won’t be the same, but you can always place some prized possessions from the ancestral home in a special place and honor the legacy that way. But your sister probably needs your support and needs, as much as possible, harmony amongst loved ones. If possible, rise above the the fear of what might happen to the ancestral home and realize it also may be connected to the fear of losing your sister, and share all the love that you can.
17
@human bean
I offer sincere condolences to you on the loss of your husband. Just thinking perhaps you are being a bit hard on yourself for taking time away from him when you thought you needed to get your house ready for his return. Everyone reacts differently to stress and to grief. Some people need to step away from it to cope in their own way.
Wishing you healing days ahead.
12
Mr Appiah, I’m afraid the children’s chances of having inherited the gene are not 25%. They are 50% if their mother ( the letter writer’s sister) has inherited the copy of the her father’s gene carrying the mutation and 0% if she did not (assuming her husband does not have it either). Indeed these are conditional probabilities but talking of the 25% overall probability does not really make much sense when deciding to get tested. Whether the mother (sister) should get tested at this point is arguable since there is nothing she can do to prevent illness but her children would probably want to know if they intend to have children of their own. If they carry the mutant copy of the gene associated with the illness, they could decide the risk of passing it on is too great and choose to adopt a child instead. That decision would be theirs to make provided they knew about it.
59
@M. M. L. You are wrong. If the mother is not tested the children should assume the mother's chances are 50% and their chances are 50% of 50%, or 25%, exactly as Appiah writes. I agree that the mother should be tested to help resolve the uncertainty for her children, but that is HER decision to make - and I can certainly understand not wanting to know. If the mother does not get tested the children can weigh their 25% of being affected against the impact of the certain knowledge. For myself I can say that I think that if my chances of being affected were only 25% I would not want to be tested - but I would either not have children or have them tested in utero.
1
@WZ
Actually, MML's math is correct, because it is based in reality. The mother either has the gene or she does not, so the children are at 50% or 0%. Adding in another factor of probability as to whether the mother has the gene (50-50 chance, then 50-50 chance for the kids) doesn't actually make the kids' chances 25%. They're still at 50% or 0%. Anyway, if they're in their late teens or older, they should definitely be told about LW's condition, and can google it from there...
1
I've read all the comments, and I'm totally confused. My advice to the letter writer with the fatal disease is to tell everyone. Then they can seek further information from professionals and from the internet.
(For a mother to withhold such important information from her children seems cruel and crazy to me. Maybe her decision is a result of the effects of the disease on her mental acuity.)
23
@Pecan We have no idea how old the sister's children are. Are they old enough to be told this? And the sister does not have the disease.
We really do not have sufficient evidence from LW1 to answer his/her question. And we have only his/her word for the sister's response.
By and large, the decision to tell rests with the parent's--and by the way, what about the sister's husband's role in all this? The letter writer doesn't mention the father's position or responsibility if he is present.
@Esquare The sister does not know if she has the gene or disease as she refuses to be tested, hence the brother wanting her children to be able to make an informed decision as to whether they should be tested or not.
Everyone of us are going to inherit a fatal condition called life and death. That I choose to acknowledge the fact that I will die someday isn't anything profound nor a novel idea. I'm well aware my time among the living is limited and sometimes I feel gobsmacked that more people don't feel the same as I do that I have no real, legitimate reason to extend my life well beyond my sell-by date.
I take care of my 91 year old father who by any normal standard is alive today only because of artificial medical procedures. His standard of life is nothing I'll ever aspire to. He's blind, can't hear much and has a very difficult time getting around and yet he never wants to hear that his time among the living is somehow limited. He says he doesn't want to be a burden and yet he is exactly that and then some nearly every single day that goes by. My choice? I have no intentions of ever putting my own kids in the same position.
36
@Martino - Your father still values his life, and you really can't judge the quality of his life from his perspective. You sound so bitter and full of resentment. I wish he had a choice other than living with you. I do appreciate how difficult it is to care for an aging parent or a very sick relative -- I have done so with my mother and my husband.
I have a living will and would not want to live when my quality of life has vanished. But it is not for anyone else to judge when that moment has arrived.
5
So often I disagree with you, Ethicist! You say to LW1, “Your sister’s misguided plan...”. All respect, how about “your sister’s plan.” She can choose to test, or not. These things are amazingly personal and change with respect to the particular illness: whether there is stigma attached, whether there is effective treatment available, how accurate testing is, how obvious illness is, whether a reasonable person might wish to detected and disclose the illness before marrying and having children, etc. Think of the differences between Huntington’s, Alzheimer’s, the porphyrias, cystic fibrosis, sickle cell, neurofibromatosis, alcoholism, BRCA1, Tay-Sachs, etc.
She cannot, however, responsibly suggest that her sister, her children’s aunt, withhold information about her own illness from the children, the nieces and nephews of the aunt, who may then make their own decisions about testing and reproduction for themselves. Parents cannot embargo their adult children’s information exchange with everyone in the family forever — much as many parents feel they “own” their children in perpetuity.
I am the adult niece of a patient with an illness with complex genetics and essentially no cure. Treatment is minimally effective at best. In this setting my father has chosen to live without testing, which is very reasonable. Each of my cousins has made their own choices. But I deserve, and have, access to the information about my aunt’s illness, regardless of his decision.
21
@Alice —yes, yours is exactly the response I thought that Appiah should posit. The letter writer can talk about her own health journey. The children—if they aren’t very young—will come to their own conclusions.
3
LW2, when reading your complaint, the terms "selfish" and "overbearing" came to mind. Your sister has limited time left, don't distress her over material concerns or your gripes with her spouse.
74
Two very sad, very difficult "problems"!
LW1's sister sounds as if she is in extreme denial. Clearly there are benefits to her to be tested and treated early! NOT to tell her kids if they are at least age 16, is criminal.
LW2: yes, a family trust sounds great but it is too late for that. Maybe tell the sister with the lousy husband to sell her half to her sister (LW2) or else the family home will have to be given up. Maybe that would wake her up?
5
@RLiss
Why does she need to be "woken up" and who says her husband is lousy? Geez.
7
@RLiss - We don't know if the husband is "lousy." He and his wife are deeply in love. The LW is not married to him -- her sister is. LW2 should focus on her sister's needs right now, and not on her own. Why should she be entitled to separate her sister from the husband she loves for an "extended vacation," when her sister does not wish to be apart from her husband?
5
Maybe just tell the children about your disease and let them work the rest out for themselves.
22
What the writer of Letter One seems to fail to realize, in their rush to inform the kids about the possibility they may have the disease, is that the news is really: “Your mom may have a fatal disease.” That is news she needs to deliver, not the writer.
12
Dear ethicist, since you are concerned with ethics, please do not say “ways that future grandchildren could be protected.” Instead say “they could choose to dispose of the affected embryos in order to only give birth to healthy babies.”
16
Re: LW2: Wow. Way to make it all about you.
If there is this much drama between you and multiple of your family members, you might want to the look at the one common denominator, who you can find in the mirror.
33
LW2: Ah, first world problems. An ancestral home only the LW (not her sister, brother or parents) cares much about reserving for blood relatives is the source of a rift with a dying sister. Get over yourself and your ancestors, LW2.
30
@Svrwmrs . Since when are ancestral homes and blood relations “first world problems”? People have been feuding with relatives for millennia, and — news flash! — people in other parts of the world own homes too.
5
@Raindrop , the phrase commonly means problems of affluent people, wherever they are.
2
LW2 - I don't know if this is an ethics question so much as a legal one. In fact, why don't you consult an estate attorney now, on your own? At the very least learn your options. Then, get some therapy to deal with your resentments so you can think more clearly.
49
@Red Ree You are correct. The type of deed may mean that the survivor becomes the sole owner. If not, the LW needs to get over investing all that emotion in a property she never had permanent secure rights in.
14
@Red Ree A discussion with a real estate attorney should be the first step! I don't understand at all the comment that the home is owned "for the most part" by the two sisters. Either it is or there's someone else not mentioned. Whose name(s) are on the deed? Is there a mortgage and in whose name(s)? There seems to be a lot of information missing before any advice can be given.
10
Truly vexing problems. For the first, I say it is not your responsibility to let your sister’s children know. As a mother it is for her to make that decision. If it is a life changing disease, then not everyone has the strength to react in a pragmatic manner. I suggest the best way for everyone to know is to simply interact with you. Be open with all friends and relatives. Ensure your sister knows about your problem and interventions for the same. She may make the decision to let her children know when she deems it necessary and will do so armed with knowledge about its treatment. In the meanwhile, focus on yourself and your family. Your sister’s family is not your burden to bear.
In the second case. It’s a terrible place to be in. A sister who is dying sharing ownership of an ancestral home. I suggest it is a matter of trust. The sisters might love each other but trust is missing. I say living sister should apologize, speak the truth and make peace with the dying one. Then extend a hand of friendship to the husband. After all he is standing by your sister in her time of need. Your parents gifted both of you their love. Your half is yours to do whatever you choose. Her half will be her husbands. Whether you like it or not, this may be a memory of her presence that she would like him to have. Our worlds are intertwined in ways that may not be apparent to us immediately. Let go of ego and accept whatever the future brings with grace.
22
If the gene is for Huntington's, which at this time cannot be prevented, and the sister refuses to tell her children, that's bad enough. If it's for something like Lynch's Syndrome, it is unambiguously evil for the sister not to tell her children that they are at risk of cancers that can be prevented, or at least postponed, by assiduous screening or prophylactic surgery.
The aunt needs to tell the truth as soon as her nieces and nephews are old to understand what she is saying.
21
The people who advocate telling LW1's nieces and nephews at 18 or 21 ignore critically important issues:
Minors are legally allowed privacy to and control over their medical decisions at age 14. They have almost full control at age 16 in most states.
Minors are, for the most part, fully capable of reproducing at age 12. It's not a great idea, but it happens.
Waiting to 18 or 21 assumes that no one *ever* has an unplanned (or teen) pregnancy.
This is a VERY bad assumption.
39
The second letter writer (female?) writes in a way that makes me question her motives. It’s normal for couples to close ranks when one spouse is very ill. It’s common for families to get weird and possessive around death and inheritance. When I handled a relative’s estate, one sister laid claim to everything of value — household goods and jewelry — “for my kids.” I lost respect for her. But now I know who she really is, and can work around that.
The letter writer might try being grateful that her sister has a loving spouse who will be with her, caring for her, to the end. That is what I would concentrate on. Find joy in the love your sister and her husband share. The “ancestral” house is just a thing. Your sister is family. Families are flawed, but they are everything.
To the first letter writer, I would say, “We own our stories.” The letter writer’s story is that she or he has been diagnosed with a heritable, fatal disease. It’s up to that person to decide who to inform about the diagnosis, and how much information to share. It doesn’t matter what the sister thinks about her children being fully apprised on family genetics. It’s none of Sister’s business what her children’s uncle or aunt shares about why he or she is dying. The kids need to know.
I wish that loving uncle or aunt well. I think their motives are pure.
15
With regard to the house inheritance, it seems fairly clear that the lady is putting the house first, and not her relationship with her sister. This is a problem. Dump the house, hold tight to the sister. Jesus said that we need to die to self, and her holding on to the house is about self.
14
Another unknown is the status of legal protections for pre-existing conditions as the children grow up and shop for healthcare insurance. If they do test positive and Obamacare is later repealed, they may then find themselves unable to obtain coverage for any treatment related to this disease. Given the volatility of the current political climate, it may be wise for the sister to delay these sad news until her adult children secure comprehensive healthcare coverage.
18
We made the decision to meet with a doctor and our son when he was about fourteen.There was concern about a disease and that he could be at risk. Fourteen was not too young. He had the support of both of his parents and the specialist, a doctor who had been involved in treatment, was the best person to meet with. We revisited this issue every so often. We were very fortunate. Genetic testing has advanced and we were able to get a clearer picture that he wasn't at risk. While age is a concern, I don't think waiting until children reach 18 or 21 best but they do need support during and after the revelation. If the Aunt tells who will fill those roles?
22
For LW1, this really isn't all that complicated, when the children get to be 12 or so:
You: I have XYZ disease, and I'm not going to live to be old.
Child: What's that?
You: It doesn't come out until you are an adult, and it's genetic. You can get it from your parents and grandparents before you're born. You should have Genetic Counseling before you have children.
I *have* genetic disease, which I passed to my children. I didn't *know* I passed them on. I didn't know I had them. Until recently, there weren't even tests for them. Heck, one of them wasn't even discovered until recently bc the mechanism wasn't well understood. My children have been angry, upset, and notably decided about not having children, even though this is not necessary. Just GET counseling. They are also stricken with the disease, which, while only moderate in symptom, makes it unpleasant.
There's no real reason for your sister to be tested if she doesn't want to be. If she doesn't want to know, she doesn't need to know.
This shouldn't be forced on children who get to make their own medical decisions, legally, after they turn 14.
6
A thought about the dying sister. Is it possible that she is under the thumb of a very domineering, controlling, and mentally abusive husband who, out of earshot of anyone else, has bullied her into leaving a "family home" to him of all people. I am not buying the fact that she leave the home to him as a reminder of her. NOT. I suspect that the husband is controlling the rolling of the pen on the will. SAD.
13
@Dinelj, that may be true. However, the letter writer’s main concern seems to be who inherits the sister’s portion of the family home. And that is both out of her control, and none of her business.
10
@Dinelj
Considering the way LW2's letter is crafted, were he to behave in such a manner she would have included those qualities in her case against him.
6
@Dinelj
I think you're reading what the letter writer was hinting at, but there's reason to suspect the letter writers is an unreliable narrator. The letter writer is the one who, to me, comes across as grasping and greedy, concerned mainly with "what's in it for me" while her sister is dying.
4
Kwame, I understand your point about the children needing to know, but perhaps the best first step would be for the woman to tell her nieces and nephews about her having the disease and the consequences and let them ask the questions that draw out the truth.
23
LW2 - Your sister is dying. She presumably loves her husband who is apparently protective of her - which is a great asset to have during a terminal illness.
Wanting to settle what happens with the property is asking your sister to focus on something that will be a contentious problem for you and the husband after her death. Any sane person in her position would probably like to focus on things that aren't fraught and upsetting and focus on taking care of herself and spend time with loving, supportive relatives.
Be one.
37
LW 1 What if the children share their mother's desire to not know? Are we presuming that they would welcome such information in order to avoid conceiving children who might also have he disease. This is a tough one.
LW 2 Your sister is dying. That's where your focus needs to be not on what she is leaving to whom. Help her and her husband through what must be an agonizing time for them. This was an easy one.
8
@Nancy D
but the children have the option not to know. They could opt not to get tested just like she is. But it would be a choice they get to make at some point.
6
@Nancy D If the children don't want to know, they can refuse to be tested. They have a right to know that there is a family history of a fatal disease, that their aunt is dying of that disease, and that a test for the faulty gene exists. They also have a right to reject testing if they don't want to know.
6
For LW2, maybe the husband is simply not willing to be apart from his spouse at the end of her life. There seems to be more going on here than we know.
19
I’m still stuck at the “ancestral” home part. I mean, who wrote the letter, the Duchess of Devonshire?
89
It may be too late in this situation, but there are mediators specially trained to deal problems like the ancestral house. They are called "adult family" or "elder" mediators. They facilitate discussion between family members about such topics as taking away an elder family member's keys, caregiver (& facility) options, using or dividing joint assets, etc.
15
@Honey - Not while the sister is dying. She shouldn't be subjected to anything like this. Too bad she told the LW what she planned to do. She should have kept it to herself.
3
My deceased mom's best friend was in a terrible car accident with her husband. She left the hospital paralyzed from the waist down. He husband never left the hospital as he was diagnosed with Huntington's.
They had a ten year old daughter and her mom told her dad had died in a car accident. As the daughter, "Dawn", progressed through teenagehood we notice a slight problem with her gait, and explosive temper and an obsession with hats. She had juvenile Huntington's disease and she already had a child.
This is a tragedy that could have been helped had she been told about her father's Huntington's.
79
If the father has the genetic disease and the daughter has a 50-50 chance of getting the disease, it is autosomal dominant (only one bad copy needed). Therefore, the sister of the LW has a 50-50 chance. The children of the sister have either a 50-50 chance or effectively a 0 chance depending on their mother having the bad gene. I know that the average of 50 and 0 is 25, but it is not flipping a coin 50 times which statistically will result in 25 heads and 25 tails.
40
As a physician I've had a number of patients struggle with decisions surrounding genetic diseases. I have always counseled being open and honest. My experience has been that when people conceal this kind of information from family it almost always ends badly. I agree with the Ethicist that the children's rights outweigh the writers potential personal discomfort.
Perhaps the one exception may be an adult child with a serious mental illness. In that case consultation with their mental health provider would be an important first step.
39
For Letter 1, there are very good reasons not to be tested. Proof of a definitive genetic link to a fatal disease can make it difficult if not impossible to get certain kinds of insurance and even basic health insurance can be threatened if pre-existing conditions come back into play. I’m not sure I would assume refusing to get tested is a sign of denial - it could be brutal practicality. Especially if there is clear evidence on how hereditary this disease is: She already knows what she need to know to be monitored for symptoms.
It’s hard to tell for sure if the kids really don’t know or if the author is conflating refusal to get genetic testing with refusing to share the condition with her children, thereby projecting denial/ignorance onto two generations.
As far as apologizing for the “quandary” the sister has put LW1 in? It’s a quandary if the author’s own making.
10
@Elizabeth W: Wow - your health system is so broken... you wouldn’t have that problem in HK.
13
@Elizabeth W Yes, that is why I got tested anonymously for a 50/50 genetic mutation that if screened, can be treated.
From talking with professionals and doctors, it became clear that my health insurance could be compromised, and long term disability and life insurance assuredly would be compromised. Just from having the mutation mentioned in my medical file.
As I watch closely, the ACA could be stricken down next term. No, this is not a good time for black sharpie, pre-existing conditions in the front of your file. Another (sad) consideration in whether family members and young adults would want to be formally tested at this time.
10
Initially I agreed with LW2 that a husband should not get inheritance of a family property, as he is an in-law rather than the biological family. There is something to be said for the fact that she is willing to pay him for half of it. The house does not have the same sentimental value to him, and this is not just meaningless and one-sided because of the sister's right to dispose of 'her share' the way she sees.
On the other hand, the sister's rights are also valid. I suggest the letter writer could flip it around and ask how she would feel if her wishes were to leave the house to HER husband, and that was being challenged.
I think that both point of view have merit and wonder if the sides could not come together (perhaps with the husband present), and discuss / try to understand where everyone is coming from and if an amicable solution can be found.
I also would be interested to know what the brother's role is in all this. Perhaps he has been 'bought out,' but he clearly is being appealed to as a moral authority or witness to adjudicate between the two sisters. Perhaps he or someone else in the situation who is trusted could act as an impartial referee. (If there is somebody)
Good luck, these kinds of things are always stressful. (And, I don't blame LW2, it's not about the money/value of the property, it's about rights and boundaries)
11
@Erin
"Initially I agreed with LW2 that a husband should not get inheritance of a family property, as he is an in-law rather than the biological family."
Um, no. People can leave their property to whomever they choose.
3
Why does the Ethicist make everything so complicated? Letter writer 1 - simply announce (however people convey information these days - letter, facebook, holiday dinner) that you have X disease and that you value their support in this difficult time. Trust me, everyone is going to google your disease and can thus make their own decision as what to do as far as testing. Your sister can hardly demand you keep your illness a secret.
Letter writer 2 - I deal in probate and let me assure you - that house was a gift to you and your siblings. You did not purchase it together. Your sister is dying and has the right to do with her portion as she pleases. She loves the husband you despise and even you admit he treats her well. I doubt he is anxious to be tied to you after his wife passes, so wait and see what transpires. On my deathbed, I would not want to wrangle over real property. I have no idea of what you mean by "for the most part owned by her and me." That implies someone else has an interest. Please just let her die before the squabbling begins.
123
@Eli Agreed. Letter writer #1...keep your conversation just between your neices and nephews about YOUR concerns about your own autoimmune issues and just let them do their own investigating. That way, you did not tell them anything about what might be in store for THEM, only you. they will put 2 and 2 together and your sister cannot say that you shared anything about HER condition. Case solved
14
@Eli
Agree. Squabbling over her property like this while she lies dying is gross.
3
@Eli About LW1, truly a simple but effective solution! How clever of you!
6
If the sister has the disease, the children’s chance is 50%, not 25%. There are more things to consider than whether or not you pass along the disease. If you have the disease, and you are somehow able to conceive a child that doesn’t carry the disease; that child still has to watch their parent suffer with the disease and also possibly need to care for the parent at a time when they are having children themselves. There are no fast rules for age of onset, and now some are noting that there are “interrupters” between the CAG repeats that may lessen the chance of developing symptoms. There is so much we don’t know. Even if you decide to get tested, and the results come back positive, you still don’t know when symptoms will begin. So you are still living with uncertainty. My advice is to let the children live in “ignorant bliss” for as long as possible, let them know when they need to know.
On Children - Khalil Gibran
Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
they come through you but not from you. And though they are with you yet they belong not to you.
You may give them your love but not your thoughts, for they have their own thoughts.
You may house their bodies but not their souls. For their souls dwell in the house of tomorrow,
Which you cannot visit, not even in your dreams.
You may strive to be like them but seek not to make them like you.
For life goes not backward nor tarries with yesterday.
8
@Christine Lehnhoff
I think he means through Mendelian genetics
BB
Bb
bB
bb
2
A house is coming between you and your dying sister, a house you only visit, despite its importance to you. Is this house really more important than your sister? Who may genuinely need her husband with her when she is so vulnerable? I can understand unhappiness over sharing this inheritance with a brother-in-law you dislike, but you might HATE your sister because of her rightful choice? I am stunned.
73
@Eileen I'm thinking her sister needs her husband there as a barrier between her and the letter writer. If I was dying the last thing I would want to think about is whether my sister will end up with everything. If the sister and the husband have children, why shouldn't he get her half so that her children can enjoy the "ancestral home" after she is gone.
25
Let's see:
-- we don't know how old all the children are who need to know about LW1's terminal condition
-- the cousins will never speak to each other about it
-- the sister's kids will never hear of auntie/uncle's illness, even after he/she dies
-- they will never look it up online.
The sister seems to be living in some sort of bubble.
At some point one of her kids are going to pop it & be very angry they were kept in the dark.
16
Letter 1:
Did I miss something? How old are these children who haven’t been told? If they are under 16, keep your mouth shut until they are. But telling little kids this would only be confusing and upsetting.
17
@Angelus Ravenscroft As other commenters have written, it may be best for the nieces and nephews to know when they are old enough to conceive a child, which is before age 16.
5
Letter 2:
The writer tried to manipulate the sister into leaving her HUSBAND behind on a big trip. That says a lot to me. I’m starting to see why the husband is being terrible to the terrible sibling.
41
@Angelus Ravenscroft Exactly. The letter writer should have slept overnight and reread this before she submitted it. She doesn't sound good in her part here.
7
@M.K. Ward Exactly. The dysfunctional 'diagnosis' is usually the tip-off.
5
@Angelus Ravenscroft —you’ve never taken a siblings’ trip? If that was clear from the start, then the ill sister is in the wrong, or at least a little insensitive, for inviting her husband. (Though maybe she was trying to broker a peace.) While the other sister is obviously concerned about the inheritance, I think—on some levels—the house is a stand-in for her sister, who will be soon taken for her. I think she is projecting aspects of her impending loss onto the inheritance. (Regarding the husband inheriting: I bet he will have no interest in keeping his share long term.
3
LW2, your sister wants her husband to have access to this home or to be able to make a decision about it after her death.
He might be eager to sell to you at that point. If he's wonderful to your sister but "horrible" to you and your brother, chances are he does not like you any more than you like him.
When he came on the extended vacation you planned for you and your sister, he was doing it for her, not to spite you. Maybe your sister did not think you could give her the care she needs, or didn't want to impose. She came because of you, and he came because of her.
Don't tell her any more about what your parents would have wanted. They were also her parents. And don't make a terrible time for her worse.
If you possibly can, express some gratitude towards your sister's husband for taking such good care of the sister you love. Stop resenting everyone. The house will work itself out one way or another. It is not worth losing a sister over.
67
@Talbot
The relationship between a terminal person and the primary caretaker is very close. You know each other's rhythms and have developed a way to provide needed care with the least amount of pain due to the emotional closeness you have. Caretakers must be diligent, empathetic and able to do anything necessary to care for their charges. And, yes, she needs to thank her brother-in-law.
18
@Talbot, the second letter is indeed a strange one, with underlying currents of murky and repellant resentments. I understand where some of the resentments might come from, though. I have a BIL who is disliked by everyone in the family, other than his wife. Even his children don’t respect him. There are very good reasons for this antipathy. From outside the family, it might look petty. It is not.
My husband and I inherited a part of a family (his family) home. I had an ownership portion equal to his. Had we not sold the home (thank goodness), I would have been the in-law in partial possession of an “ancestral home.” I’m pretty sure that would not have made my in-laws happy.
Families are complicated things.
9
@Talbot If the parents would have wanted the family home to never be owned by anyone not in the immediate family, they could have structured their wills in that way - or created a trust structured in that way. It seems to me that the parents wanted the sisters to inherit the house and to do with it as they wished.
1
My aunt married the son of a famous biology professor.....who hid from his children what he had figured out from his own study of his family tree: that there was an hereditary predisposition toward cancer. My uncle died from cancer and my aunt lost three of her five children to cancer. To hide this information is immoral and cruel. The LW should speak up.
29
@Martha Reilly I'm guessing that it would be hard to find a family that is NOT predisposed (if there is even a meaningful measure for 'predisposed') for cancer.
3
Why not go public with your disease and urge everyone to be tested? Support an organization that fights the disease. Your message would be directed at a broad audience and would foster a conversation.
16
Letter two.
You co-own the property with your sister and like it or not, she has every bit as much right to do with her half as you have a right to object.
First stop with the “what ifs” as if have a say you can control the future. Life is unpredictable. Who is to say you will not be hit by a car tomorrow and die before your sister and this argument will be moot.In the end, the time you have with your sister appears limited and fighting together is a wasteful way to spend your time.
After your sisters death, your brother-in-law might have a change of heart. Time and circumstance changes priorities. As you age one or both of you will want to unload the burden of owning a second property or might need the financial assistance from selling the property. Again, the present has little bearing on the future. Worrying now about what might happen later is a fools errand. Focus only on the here and now.
Lastly, feelings are most often mutual. If you don’t enjoy your brother-in-laws company chances are he doesn’t enjoy yours.
My guess is that as long as the property remains in the family he will have no objection to working out a time sharing agreement that will be amicable to both parties.
Chill.
19
@Leslie I can't imagine the BIL would want to continue owning property with letter writer. He is probably sparing his wife's feelings by not discussing how quickly he will get out of this once she is gone. The longer she wrote, the better he sounded.
13
@M.K. Ward LW2 aside, I just am not sure I agree. If the BIL really did not want the house, why not just suggest to his wife that she leave it to her sister?
1
@maeve , maybe they aren't concerned with the house at all. Maybe it’s at the bottom of their list of things to talk about or care about now. Neither should be pressed about it. At all.
1
You have given misleading advice. If the sister does not have the disease, there is ZERO percent chance that her children have the disease. If the sister has the disease, there is 50% chance, her children have the disease. Since it is not certain that the sister has the disease, the chance that her children have it is 25%. In any case, family medical history should not be hidden from adult children.
10
Telling what you know to be true is a duty. What you may tell is not a curse, it is hope. I have a genetic disease but it is not fatal. Knowing it is what it is gives me all the options I can claim. This is the issue you face. You don't know the outcome of those that have born, but you do know the cause. Being mute does not protect anyone but your end result.
Consider the fate where they contract the problem and knew you didn't tell them. That is your curse. Should you perish from this that will be the end.
This is a serious issue for anyone to consider. It is not easy nor should it be. Take the time and consider the future beyond your own. It is at the end only your decision. That too is as it should be.
3
Mr. Appiah, you have made an error in the calculation of the sister's children's risk of inheriting this disease. If the sister has inherited the same autosomal dominant genetic mutation as the letter writer, her children also have a 50-50 chance of inheriting the condition, the same as their cousins, not a 25 percent chance. 25 percent is the chance that any given child will inherit a recessive condition if both parents are carriers.
8
@Nina Appiah made no mistake. There are 2 independent events, each with a probability of 1/2. One event is the sister inheriting the gene. The second event is one of the sister's children inheriting the gene. The probability of both events is 1/2 times 1/2. That's 1/4, or 25%.
3
They are NOT your children. Mind your own business or you'll lose both a sister & being an aunt.
8
Letter one: agree, 100 percent.
Letter two: THIS is why you never, ever co-own Property with Family Members without proper Legal protection and paperwork.
This even applies to Spouses, for those getting re-married OR getting married when they have significant assets. Protect yourself and your Children, above ALL else.
11
@Phyliss Dalmatian They inherited the property; so not actually a choice to co-own.
8
@Roger
Yes. But the should have made plans and done the Legal paperwork after they inherited it.
It’s the prudent thing to do, to avoid disagreement and disaster.
For LW 1, isn’t this a simple situation? She tells her nieces and nephews that she has an inherited terminal disease. They all should know and the rest they could figure out on their own.
For LW 2, I’m sorry but dysfunctional families are usually very invested in continuing the dysfunction. Be nice to the husband. And no mention of children.
22
LW #2 What is the ethical question? Perhaps "Is it ethical for my dying sister to ignore my wishes?"
23
Mr. Appiah is imposing his view of morality and pretending his is the clear cut moral choice.
He would want his wife to abort a fetus who carried a gene that would result in a child who would die at age 40 or 50 or 60 years old. Or would want his wife to engage in in vitro fertilization so that defective embryos would destroyed before being implanted.
Whether the sister does or doesn't have the gene, she would prefer that her children not be forced to make an inherently immoral choice to destroy an embryo or fetus that has a 25 or 50% chance of enjoying a life that will only be 50% of a normal life expectancy.
1
@ebmem The key word here is "choice". No one is forcing them to make any choice. But they deserve to have all the information available to them. If they believe abortion is immoral, they don't have to choose it. Many people who don't believe in abortion are ok with IVF. Your place in heaven is assured, why do you feel the need to limit the choices of other people?
24
@ebmem
There is nothing "inherently immoral" about deciding NOT to bring a child into the world who is going to die young. On top of burying you when you are young.
Give me a break.
As as someone who has a genetic disease, which is not fatal, but is inconvenient and causes tons of pain and debility, had I known before I was having children that I would not only bear children with this disease, but because the ex was also a carrier, I would bear a child with a worse form of the disease. She would experience more pain, more disability, and have more serious health problems, there is NO WAY I would have brought her into this world.
No "immoral" choice about that.
How DARE you say anything different. You didn't have to watch her suffer. You didn't live with the fear of not knowing what was wrong with her. You didn't struggle for a decade before we got a diagnosis.
In fact, you who toss around "immoral," don't know anything about what you are talking about.
THAT is immoral.
26
@ebmem Abortion and IVF are not the only choices. A third choice is not to have children. That can be accomplished by use of contraception or by celibacy. I'm sure that you don't oppose celibacy on moral grounds.
20
Seems there is a fairly simple answer to #1. At a family get-together, announce that you have something to say and then tell them that you personally are diagnosed with X, that it's terminal and say that you would appreciate their understanding. Don't say anything about your sister. Make it about you, which you certainly have the right to do. They will then have the choice to ask questions or to simply look it up online. That also leaves your sister a chance to save face.
55
@Cloudy I'm surprised the ethicist did not see this simple solution. The LW is allowed to discuss her medical condition.
You believe that your sister willfully ignored the possibility that she may carry a gene for a fatal disease. This presupposes on your part a certainty of the medical facts regarding this genetic disease. I'm assuming that your facts are correct.
Telling minor children something disturbing that their parents don't want them to know, and that they cannot control, can ramify in unpredictable ways. Believing that one's parents may have withheld knowledge of the possibility of one's own premature death would be traumatic.
Say nothing to them until they are 18. When they are legal adults they have a right to know. Tell them then. Make sure that this information can get to them in case of your own death. Be prepared to lose your sister; it may be unavoidable, but you will have made a courageous decision.
7
What if LW1 were to write a letter to her sister's children and arrange for it to be sent to them at age 21 or so, telling them that she inherited the disease? She could then avoid alienating her sister, and at the same time ensure her nieces and nephews knew about the possibility of risk.
1
Please consult a geneticist or genetics counselor to get correct information about risk status and patterns of inheritance. A genetics counseling session could help you further discuss, evaluate, and process the struggle you are having with what your responsibility is or is not to extended family members. There is a scary amount of misinformation here in the discussion of genetics in these comments with the caveat ‘I’m not a genetics counselor or I’m not a geneticist BUT...’ It would be better to talk to a professional in the field. At the very least, you will have someone with a mastery of the facts and in the best scenario, you will have someone who can truly help you navigate how to move forward. Warmest wishes and best of luck.
18
@PLW,
Agree completely.
The expression of gene variants that cause a disease varies oftentimes in timing and severity.
A genetic counselor dealing with the specifics of the letter writer’s genetic constitution and what is known about how it is likely to be expressed in succeeding generations is a way of figuring out what the children should be told.
7
@PLW exactly. Genetic counseling would ensure the family understands the true genetic risk and likelihood of disease onset. It can also help the family create a plan for communicating (or holding off on communicating) to family members. Those at risk will have very diverse perspectives. Not everyone is ready for this information at the same time, not everyone wants to be tested, and not everyone will share their test results. It's also possible that the sister has been privately tested or has privately consulted a counselor. If the sister's children are at a mature age, the writer can certainly share her own diagnosis with them, and be available if they have questions. But working through the best ways to communicate as a family, with a counselor, is ideal.
8
I also STRONGLY encourage consulting a genetic counselor for the the letter writer in the first letter. S/he can help guide the discussion in a scientifically accurate and sensitive fashion for the family at large. There are a lot of ethics surrounding telling and testing minor children.
I also have a bit of a disagreement with Appiah's comment that individuals aware they are at risk for Huntington's don't become more anxious or depressed. In fact, the rate of suicide markedly increases in this population around the time of diagnosis, for a period of time. This is of concern for anyone receiving this diagnosis in particular, however for minor children who are not fully developed cognitively and are unable to weigh the ramifications in the same way an adult might be able to, this places them at elevated risk of making a rash decision with dire consequences.
Please consult a genetic counselor and perhaps a therapist who specializes in working with people with terminal diagnoses. There are a multitude of online support groups and many organizations (HDSA, ALSA, PPMD, CureSMA, etc.) have great resources as well.
3
There was a time when people suffering incurable fatal diseases were never told the truth about their condition. Lou Gehrig was falsely told that he could recover. Buster Keaton, suffering terminal cancer, was never told either.
I think everyone should have a right to make their own health decisions, and to make those choices, need to know the truth of what risks they face. This is necessary to allow them to make their own life choices, and, to keep abreast with interest in research and developments in the detection and treatments that may become available.
Failure to provide this information is irresponsible and cruel. You would warn a person in the water about the presence of sharks, even if they were so far out that they might not be able to get ashore. But they deserve to be given the chance.
15
Perhaps when you spend time with your sister's kids, you can lightly talk about what you have, why your bones hurt, are forgetful, moody or explain whatever other manifestation they can see and why it is hard to live with. Don't mention genetics and be vague about the prognosis. Then, gently, as if in passing, give the exact name of the disease. If they are 12 (pubescent) or older, at least one of them will google what Aunt X has. That should get a conversation going between your sister and her children pretty quickly with you staying out yet ready on the periphery to help them come to terms with your predicament and subsequently theirs.
If they are still young children, they don't need to know, do they?, especially the genetic component of it. Over time they will find out, hopefully your sister will be the one to tell them.
8
Dostoyevsky’s young consumptive is a fictional character whose 'behaviors' (also fictional) are created by, and for the purposes of, the author. So, not a good guide.
15
LW1 - It sounds like the sister is trying to protect herself from the knowledge of having inherited the disease or not.
The sister's children have a need to know under 2 circumstances -
1 - There is effective treatment.
2 - The children are in a reproductive relationship and before they become pregnant or make another pregnant.
6
@turbot
Good lord, u think they don't need to know if there isn't treatment? That they'll thank you for keeping them in the dark? I don't think so.
6
@turbot My insurance company denied me genetic testing for an autosomal dominant disease that runs in my mother's family (my mother died before she would have shown symptoms, and before genetic testing).
Their reasoning was that there was no treatment, therefore there was no reason to test for it. My children all chose to remain childless since they could only be covered for the test if I tested positive.
2
One factor not mentioned was the age of her sister's children. Are they adults or minors? I find this very relevant. If they are young, perhaps the stress of imagining their own untimely death caused by this possible inheritance would be too weighty. As an adult, perhaps in their twenties or older, they would be able to take their own decisions and get tested themselves, should they so choose. We have a similar situation in our family (my husband inherited the BRAC-2 genetic mutation), but I feel there is zero need to tell my young children at this time. This is a conversation to be had IF their father is to eventually fall sick or when they are adults in their 20s (before they get married and have children of their own).
21
@Leigh Shouldn't the children be told when they grow to the age of procreation? A person in her/his 20s is quite able and even likely to have one or more children.
I agree that the LW's general announcement at a family gathering is the best way to handle the revelation.
3
@Leigh
Frankly - humans are capable of having babies as early as their early teens. It is possible that one of the children could marry in their late teens. So I think it's better to tell them when they're mature enough to understand the information. That way they have some time to process it and sort out the implication in their own lives *before* they have to make a choice.
I see it as being similar to adopting a child. If the child grows up knowing s/he's been adopted (and loved), there is no future state where they suddenly find out and have to review their life in light of that new knowledge.
Regarding the first letter and the chances that the writer's nieces & nephews have also inherited this mutation, their odds of doing so are stated incorrectly: "Given that your sister’s chances are 50 percent (and that it’s vanishingly unlikely that her partner has the gene), her children’s chances are 25 percent." That's not correct: the children's chances are either 50% (if the LW's sister also inherited the mutation) or 0% (if she did not). The children's chances are not the average of those two values: they are one or the other. This has an important effect on how one thinks about the risks and benefits of passing information about the disease risk to the children directly.
106
@Mike I was also confused by the wording of the letter. The LW says that the sister has an "off chance" of having the disease, when it seems like the sister should have a 50% chance. I wouldn't call 50% an "off chance," which I think connotes an unlikely possibility.
So I wonder whether there is a window for onset of the disease, which the sister has passed, meaning it is unlikely that she has it, and the likelihood of her children developing it even less. Which makes the situation much more complicated IMO. If there's a 5% chance that her children will get it, I'm not sure I would say anything, but if it's 50%, I would.
7
@Mike, 25% is the correct description, in a statistical sense: if you have 100 mothers with unknown status and a 50-50 chance of having a particular single-gene mutation, and each of those 100 mothers have one child, then 25 out of the 100 children (thus "25%") will have that mutation, too.
Population statistics make less sense when you narrow it down to a single individual, because the single individual either has this mutation, or doesn't. We are all either 100 or 0 in the end.
16
@Mike The reply by Well is correct. Once the sister has been tested her children's probability will be either 50% or 0% ... but until that happens the sister's probability is 50% (perhaps less given her age and no onset) and her children's is 50% of 50% = 25%.
5
My wife’s family suffers from polycystic kidney disease (PKD). Her mother is the carrier and had five children, almost all before knowing her own diagnosis in her 30s. Two out of five children inherited it. Both also have severe mental illness, and it looks like neither will have children. But this is the thing, no one in the family much talked about any of this until she needed a transplant 7 years ago, and so each got tested to be a donor. Because onset was around 30, and my wife 37 at the time, she was the most definitive match with no signs of the disease (there was no reliable genetic test at the time). But because discussion was limited prior, we had already had a child and not really considered the ramifications of what if she was a carrier? I still can’t believe this, to this day. So even when there is disclosure, it doesn’t mean everyone really understands.
26
I am not a geneticist, but from what I remember from college biology your statement about the sister's children having "substantial" odds of inheriting the gene are incorrect. You state that even if it turns out that the sister does NOT have the gene, her children have a substantial risk of inheriting it. The appears to me to be impossible. You cannot pass along a gene that you do not have.
I think it is true that if the troubling gene is a recessive one and the sister has it but is fortunate enough to have a genetic combination that leaves her free from the disease, THEN she could indeed pass the gene on to her children. But not if she does not have the gene at all. Maybe picky, but facts count.
28
As a physician, as a person, the children need to be told. I aslo think it's really odd that the whole family isn't open about information like this. This effects everyone in the family, hiding in the sand doesn't change anything except to increase risk and create an environment where someone is suffering alone instead of being supported by family. I mean, isn't the point of family to be there for each other through hardship?
80
Don't be quick to assume that "it’s vanishingly unlikely that her partner has the gene." I am living proof of a person whose parents each carried the recessive gene for an obscure but life altering heart defect. Of the four children they had, the statistical model says that two of the four could end up with two recessive genes and, thus, the defect. I have it, my younger brother died of it, my other two siblings are not afflicted.
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@fireweed . Yes. I also have a family member who is a carrier for a rare disease, and was shocked when testing revealed that her husband is also a carrier.
4
Another autosomal dominant genetic disorder that can shorten one’s life if left undiagnosed and untreated is Familial Hypercholesterolemia (FH). Diagnosis and treatment in childhood can almost normalize the risk for early, aggressive heart disease caused by lifelong exposure to very high LDL cholesterol in people with FH. Telling family members and getting cholesterol tested, if not genetically tested, can spare others in the family from early heart attacks, stents or bypass surgery, and even early sudden death from cardiovascular disease.
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@C One of my best friends has this disease, as does his entire family. His father died in his early thirties and my friend has been on statins since their invention. His two sisters have also died of this disease.
6
@C Yes, newborn screening would help with families that are affected with FH. Thanks for the comment C.
4
Re LW1: The ethics of medical genetics are a constantly moving target. I have co-taught a course in which ethics was part of the curriculum (taught by another faculty member) and every year the current "answer" to the same problem was different. That better than anything else illustrates the quandary we are in.
KAA advises the sister to tell her sister's children about the risk so they can decide to get tested. However, what if the other children and their mother do not want to know?
If one of the children gets tested and tests positive, the mother will know for CERTAIN that she is a carrier. And her other children will know for CERTAIN that now they have a 50:50 chance of being affected.
They no longer have a choice. Their right to self-determination has been taken from them.
If this is the way it should be handled, society should determine that and HIPAA should be the first law to be repealed, since it hinders medical research and progress more than anything else.
And HIPAA is meant to protect precisely that kind of information.
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@Captain Nemo Or the sister and her children could have a discussion and agree that if anyone gets tested and is positive, that person will not inform those who desire to remain ignorant.
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@Captain Nemo The ethics of having knowledge of having a terrible genetic disease and then passing your bad genes onto your children is the ultimate evil to me. There is also the ethical issue of spreading your disease with the possibility of infecting more people (kind of like inventing your own slow moving genetic bomb). If I had high probability of inheriting the genetics for a terrible disease, I would like to be told about it.
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@Captain Nemo The disease itself removed the 'right' to self-determination, knowledge of it gives the victim some freedom to determine what to do about the diagnosis.
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I find Letter 2 very interesting. There's so much under the surface. What does the husband do that is so terrible? In what ways is the family dysfunctional? It sounds like LW2 is someone who cares deeply about family, but hasn't been dealt a very good one, and that there's a lot of lingering pain from that tension between desire for family and family dysfunction. I wonder if LW2 has tried to work through this over the years with a counselor.
One thing that went unaddressed in the response is that LW2 has put a huge amount of effort into making sure the home stays in the family, which it seems the husband has not done. Ethically (though not legally), that may be a good reason for him not to have a stake in it.
Illnesses can change people, sometimes not for the better - I have seen it happen. There's a novel's worth of family drama lurking underneath this letter. Maybe the writer should consider writing it?
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To LW 1: I'm so sorry for your diagnosis, and I admire your courage in seeking to make sure your nieces and nephews receive information that they have every right to know. It's morally wrong for the sister to keep her children from knowing about the possibility of having inherited a fatal condition. Although terrifying, the knowledge would allow any affected children to plan ahead and avoid passing on this gene. As long as the children are adults, they have a right to know. To LW 2: Your sister owns a portion of the house and therefore has a right to leave it to whomever she wants. If your brother-in-law wants to use the house, you'll have to work out a schedule that allows you to avoid him. It's unfortunate that you'll have to continue dealing with him, but lots of things are unfortunate, like wasting precious time with your sister being angry over material things. Peace.
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@Roberta
About the case of the woman with 50% odds (@ Mike: Odds are 50%, not either 0% or 100%, otherwise they wouldn’t be “odds”) of getting the lethal disease, I have two doubts:
1- In my opinion, as Roberta and Leigh highlighted, the age of the children is critically important, and we don’t know it.
2- The children, if old enough, have the right to know their risk. But, if old enough but still minors, has the mother’s sibling any right to communicate them their 25% odds, imposing his/her ethical opinion to another family?
2
Since this is an adult onset disease, I think it is only kind to wait to tell the children about their potential vulnerability, since kids do not have a good sense of the meaning of something like this. Once they are a bit older than they can be informed about their aunts disease.
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Depending on the ages of the sister's children and how much time the LW has before she is obviously symptomatic, it may be enough that the children know what disease LW has. If they have any curiosity, or sense, when they are old enough to worry about genetic predispositions they will then have the info they need to know that they may -- or may not -- be subject to or carriers of the same genetic disorder.
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"Preserving your own uncertainty is defensible; putting others in jeopardy is not."
Agreed, if the others already exist. (The question of whether to have children who may get the same disease is another, subtler issue.)
9
My parents concealed a genetic illness from me & my siblings. The result was that, when my brother got it it took way more time to be diagnosed and that was catastrophic. I think we owe it to our children to tell them about the possibility. If the parents choose not to tell, the child might be extremely bitter that years when he could have been making arrangements for himself were wasted. It's not as if the parent is "at fault" for carrying a negative gene and the matter should be treated as unemotionally as possible.
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@Kajsa, I'm so sorry for this. I can't imagine how it has impacted your family relationships, and especially importantly, the health of your brother. I wish him, and all of you, the very best as you deal with the aftermath.
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I'm a doc, yet I am confused over this sentence regarding the incurable disease: "But the risk that her children have it, and could pass it along to their children, remains substantial." Is it not true that, the older the woman becomes while not showing symptoms, the less likely the children are to have inherited the A.D. gene themselves?
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Are you saying that if she carries one copy of the gene, she would be sick, so if she isn’t sick yet, it is unlikely she is carrying it? That would make sense, so long as the disease is one that invariably appears by the time you reach her age.
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Yes I had the same thought about that! To use the example of Huntington’s, if the sister keeps living and doesn’t show symptoms, at some point we would be fairly certain she didn’t inherit the gene; thus she couldn’t pass it to her kids and the ethical quandary is moot. Of course, as long as sister is still in the ‘window’ where she might yet start showing symptoms, then there could be an ethical problem if her children are of childbearing age and perhaps planning families themselves.
20
I’m a PA, and I thought the same things.
The situation of the genetic disorder is a complex ethical question that has significant psychological and medical implications. This is not the sort of problem that can or should be addressed by a newspaper column. I would suggest that the person involved should seek counseling from a qualified genetic counselor and then depending on what advice that person gives, she might suggest to her sister that she come with her to see the genetic counselor. Education is the goal before one decides to create a family crisis.
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@DKW. I have great respect for therapy, and I know its great benefits and its limitations.
I respectfully disagree that this column is inadequate to discuss this ethical decision.
The ethical disclosure to her nieces is only a conversation about the chance of an earlier, yet inevitable mortality. Psychology can not change it. It can influence how we may live better.
The question is, do people have the right for self determination with available knowledge. I say yes.
11
@DKW I completely agree with your comment. A visit with a genetic counselor, hopefully with her sister, would shed more light for both of them. I do not believe the comment "it was 10 times as hard to die when death was certain". My father died of ALS. During the 2+ years from diagnosis to death he remained hopeful of a cure or a cessation of symptoms. Call it denial or whatever you will, he still found meaning in those years.
2
@DKW
Experts of any kind have a role to play.
They never have the only role to play.
3
Well, both of these stories certainly put my current problems in perspective. Nobody's terminal, and I'm quite grateful.
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@Jrb Same here.
3
Kwame...I understand you didn't intend such, but your reference to "The Idiot" seems a bit insensitive in this context :)
Also, I think the sister's children's age makes a difference. Are they over 16,18. If their Mother refuses to discuss this issue, might she also be neglecting talking to them about drugs, drinking, driving, safe sex, no means no, etc.?
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@wschloss :
disagree: classic literature exists to tell us truths in any time and place.
17
@wschloss It's an excellent choice of a literary work that is directly relevant to the issue under discussion. I hope that I have misunderstand your reasoning and that you are not so literal minded as to believe that the title of a masterpiece of literature is some kind of personal insult. My apologies to you if that is true.
10
LW 1: While I would most certainly tell the children, I would tell them at the time of puberty. Also, I would explain about contraceptives and methods of birth control (especially the morning after pill) to all of them. And I would also offer to help them gain access. This may go against their mother's moral stance, but I believe there is a higher ethical stance.
I'm a retired physician, so I know the devastation such diseases can cause. I have also had friends who have refused genetic testing -- which I suggested they have. I am also thinking of the distress that it would cause to have genetic testing with a fetus in utero, and then have to make the decision.
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@Shirley Adams Discussing contraception with teens is important, but doesn’t require this information to be revealed. Teenage pregnancy is automatically an issue due to its negative impact on the adolescent’s future. This can be discussed without mentioning anything about the genetic disorder. -NW
9
For the first LW, I think the obligation to the sister's children is the highest obligation, assuming they are adults. Tell them about the diagnosis and its genetic component, explain their mother's desire not to know, but also warn them that they should consider securing financial protection like life and disability insurance before being screened (if they decide to be screened), as a positive screen will likely make it very expensive or even cost-prohibitive to purchase.
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@Sara
By just telling them, they are no longer insurable. Any insurance company can repeal any obligation and demand restitution if they can show that the children knew about the risk, but concealed it.
And word gets around.
So better think about that as well.
34
@Captain Nemo
This is not so. The US passed the Genetic Information Nondiscrimination Act, which prevents health insurers from denying coverage, or employers from not hiring (or firing) someone based on genetic information. In addition, the Affordable Care Act (aka Obamacare) prohibits health insurers from denying coverage because of pre-existing conditions. Of course, if the current Administration and its Justice Department has its way, the ACA safeguard will go away.
30
@Sara is correct that the Genetic Information Nondiscrimination Act (GINA) does NOT cover disability insurance or life insurance. (The latter is often required for large mortgages.)
Nor does GINA have any real "teeth",as there is no effective way to prove that genetic discrimination was the reason health insurance or employment was denied, nor a way to effectively undo the damage to the person discriminated against.
A medical geneticist colleague cheerfully said "In 10-20 years we'll have learned that EVERYONE has a genetic predisposition to illness, then we won't be able to discriminate against anybody".
Maybe. I hope so. Until then, much of the value of increasing advances in genetic medicine will be underutilized.
Unless we decide everyone needs the assurance that they will get whatever health care and disability insurance they need, period.
16
Of course the sister's children in the first letter need to be told, it's just a matter of when. How old are they? Children? Teenagers? Adults? Tell them as soon as they're old enough to handle the information, even if it scorches your relationship with your sister. They have to know.
I was diagnosed with an incurable disease at 23, one that will almost certainly significantly shorten my lifespan (since average survival rate is over 15 years and some people last decades, it's not classed as a fatal disease, even though it kills). It was a really hard thing to hear at 23, that I might not have lived to see my 30th birthday, but truth can't be hidden or wished away. The only thing to do is to face it, head on, and try to learn to live with even the most painful truths. I badly needed honesty from my doctors during that time. Those who took me at my word and gave it to me, even when it was hard, even when it made me cry, earned my eternal gratitude.
This is potentially a matter of life and death for your nieces and nephews. How they choose to handle that information is up to them - they may follow their mother and refuse testing - but at least they've been given the choice. Your sister is likely terrified for her kids, I know what a toll my illness has taken on my own parents, but that doesn't give her the right to keep this from them.
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@Jennifer Best to you, Jennifer, and to your family.
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@Jennifer Sending you strength and love
14
@Jennifer Indeed, best to you and your family,
However, I don't think it is up to you (the letter writer) to tell your nieces and nephews. It is up to you and the father, at least until they are of age/adults. Just wait and see how your sister is dealing with it in the meantime; the kids will very likely find out what ails you and get hints to find out. don't underestimate a youngster's natural curiosity and their abilities to google your condition especially if they are close to you.
Jennifer good luck and wishing you well.
7
One does not "protect children" with pre-implantation diagnosis. One eliminates the possibility of the birth of a child with a condition.
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@Di
Perhaps what was meant was that the children have the knowledge and possibility to act so that the children they have are protected / spared from becoming parents to people who may die from this or themselves become such parents? Unless of course the first generation choose not to know, or not to act.
4
@Di :
as explained in the article, that is not the ONLY thing that letting the "kids" know about this would accomplish.
4
@Di
Thanks. I had the same thought.
1
LW1: Are the sister's children adults? If/when they are (maybe as soon as they turn 18, if they haven't already), tell them, with the stipulation that their mother doesn't want to know so if they decide to get tested, they should not tell her they have done so and not tell her the result.
LW2: The spouse of the terminally ill sister is taking care of her in everyday life, they may have limited time left together and want to make the most of it. It is entirely reasonable for her to want him to come on vacation at her ancestral home. If you want one on one time with your sister, ask her to come a couple of days before he does, or stay a couple of days after he leaves. And if you want to buy him out of his share after she has passed away, he will probably agree, for the right price.
41
@UA I don't think she wants to buy him out; I think she is resentful that the sister doesn't give it to her out-right.
5
" We’re talking about a disorder that you’ll get if you’ve inherited the mutation from either of your parents and that doesn’t produce symptoms until after you’re grown and able to reproduce. (In medical terms: an autosomal dominant genetic disorder with adult onset.) That’s the case with conditions like Huntington’s disease and certain forms of A.L.S. and leukodystrophy." The typical onset of Huntington's Disease is 30-40's. However, people are born with active symptoms, so this article is not completely accurate in describing Huntington's.
9
If I were the sister’s child, I’d never, ever forgive her—or my uncle— for not telling me about the gene. That’s something no-one seems to be taking into account. To deliberately put me at risk for passing on a terrible gene to my own children?
I think the sister is playing a dangerous game; she’s risking alienating her kids and grandkids. If I were the OP I’d explain this to the sister and then, if all else fails, mention my own test results to the kids. They’ll get the picture—if not immediately, then when they’re thinking of marriage and/or children.
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@S Turner Good point, the sister can't stop her from telling them about her own diagnosis.
14
LW2: It's also entirely possible that the sister is using her husband to do and say things that she doesn't feel comfortable doing or saying himself, saddling him with the burden of being "terrible," which he is willing to do out of love for her. I won't claim that this explanation is definitely in play here, but it wouldn't be the first time that someone used the intermediary of a spouse without all of the baggage of shared familial history to escape what has become a stressful and draining relationship with family.
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@not nearsighted
This happens frequently - one spouse or partner acts out feelings and desires that the other cannot bring her/him-self to express.
LW2 seems to believe that only her feelings matter, and has enlisted her brother - who she has indicated that she doesn't respect - against her dying sister.
The ethical issue: is it right for LW2 to pursue her own goal in opposition to her sister? What particular ethical values are being applied to assess the LW's stance? The happiness of the family members? It is fine, if it can be done without damaging family members, to hold on to an ancestral home that carries symbolic meaning. But that home is a material thing, after all, and the family dysfunction suggests that what it signifies isn't compassion or unity.
This is another one of those situations where the family's painful, convoluted psychological dynamics trump ethical considerations.
There is no suggestion at all that the husband is manipulating or not undermining her sister. The ooposite is implied. She should respect THAT living family boundary, and her sister's limited time.
As To LW1 - 'nuff said already. Plus, if there is any contact between families, cousins talk to one other. Better that the fearful sister realize that her children WILL learn of the condition one way or another, and it is better to transmit the information in a compassionate and informed manner. They'll lose trust in her should they learn that she kept this a secret from them.
16
LW1: The letter does not state the ages of the sister's children but I presume that are young, perhaps too young to grasp the implications of the genetic aspect of the family disease. If this is the case, I would wait until they are 21, explain the disease and recommend a session with a genetic counselor so they can better understand the implications for their own health and that of any potential children. It may impact their family planning decisions.
LW2: The family home ownership should have been conveyed to a family trust if the objective was to maintain this home within the family for many generations. Since that has not been done, there are 4 options- to buy the sister's interest which she has heretofore declined to sell, to sell the letter writer's interest to the sister and her husband, to share ownership with the husband after sister's demise, to sell the home after sister's demise splitting the proceeds between the letter writer and the sister's estate. Perhaps the reason that sister had her husband accompany her to the visit to the old homestead is that she feared that the visit was going to be used as an opportunity to pressure her to sell her interest or to leave her interest to the letter writer. Of interest would be the market value of the home in question, how the expense of its upkeep is shared etc.
45
@Rosemary 21 is too late. They might have children, they might have a spouse, they might have decided on a life path. They need to know BEFORE any of these things have happened. I assume they are not 6 years old.
1
LW2:
It’s a bit surprising that one sibling who is extraordinarily close to a sister can find no redeeming quality in that sister’s spouse. Could there be an underlying issue, like rivalry over that sister’s attention? In any case, sometimes people are simply package deals. The husband is part of the sister’s life and there is no point in treating things otherwise.
And knowing that the sister is here on limited time should be an impetus to make the dynamic better. Why should her remaining life be marked by resentment over her husband? Her emotional well being should be given particular consideration and no, she is not selfish for not wanting to be pitted against anyone.
78
LW1:
There is another reason to know if one is disposed towards a fatal condition, and that is such information can shape how you live your life. Having an estimate of your healthy years changes what they mean. So it’s worth knowing.
It sounds like the sister is deeply in denial and just can’t deal with the subject. It’s a shame if she won’t be part of the communication, but maybe there’s nothing to do about her.
Without knowing how old these kids are, it’s a bit difficult to advise on how to broach the topic with them. If they’re not yet teenagers, I would think they were too young to really process it. If they are at least in their teens, I would talk to them about what you are living with and introduce it in a personal way.
Good luck.
59
Ancestral homes are a mixed blessing. We had one, with a lake, and a view and acreage, for over 80 years and multi generations.
Selling it was extraordinarily painful. It was also so freeing. It is hard to keep in mind that not all memories are pleasant. I keep the good memories in the attic of my brain and visit whenever I want. Sometimes, it's good to just let go.
228
@Mary Excellent answer Mary. As a Realtor, I’ve often advised clients to fall in love with people and not houses. This is similar.
15
Another inheritance question and an opportunity for me to express my opinion. We can leave our earthly belongings to anyone we wish. We have no obligation to share fairly between family members. We can leave them everything or nothing. My small estate is going to a scholarship fund when I die.
Please write a will before you die. Don't expect family members to know your wishes.
148
@Art Layton,
Why give a scholarship to a family member when you can give it to an organization which will give a large fraction of it to a stranger?
Thank you!
2
The parents should have placed the ancestral home in a trust so that only the siblings inherit (including the brother, whatever it is that's going on with him), period. When the ill sister dies, the home then is split between brother and surviving sister.
As for LW1, not true, Professor Appiah that Huntington's doesn't afflict until age 40 or older. A close friend of mine, her family was wiped out by it - four siblings and their father. All were afflicted before age 40; one sibling was in her 20s; all siblings were gone before age 50. My friend suffered depression over it some 10 years before becoming symptomatic. Their mother literally died from a broken heart - heart attack, and she did not live to see two of the children die on the same day of Huntington. RIP, F family of Jamaica Plain, Massachusetts.
98
@PrairieFlax Professor Appiah said average onset. That means some people are affected at 40, some later, and some earlier.
Age of onset is complicated.
"Trinucleotide repeat disorders generally show genetic anticipation: their severity increases with each successive generation that inherits them. This is likely explained by the addition of CAG repeats in the affected gene as the gene is transmitted from parent to child. For example, Huntington's disease occurs when there are more than 35 CAG repeats on the gene coding for the protein HTT. A parent with 35 repeats would be considered normal and would not exhibit any symptoms of the disease. However, that parent's offspring would be at an increased risk of developing Huntington's compared to the general population, as it would take only the addition of one more CAG codon to cause the production of mHTT (mutant HTT), the protein responsible for disease.
...Each successive generation in a Huntington's-affected family may add additional CAG repeats, and the higher the number of repeats, the more severe the disease and the earlier its onset. As a result, families that have suffered from Huntington's for many generations show an earlier age of disease onset and faster disease progression.
https://en.wikipedia.org/wiki/Trinucleotide_repeat_disorder
45
@PrairieFlax
Maybe the parents were fine with this; you cannot assume they cared whether it stayed with blood relatives.
On the other hand, I wholeheartedly agree that people should think about what they want to happen to their property, think about the repercussions for those involved and secure a trust to make sure their wishes are met. For surely without one, it will become e more painful than it has to be.
25