<p>to inform extended family members if a person is diagnosed with a disease that has a genetic basis?</p>
<p>I don’t think there’s any obligation to tell anyone about any medical diagnosis.</p>
<p>That said, I think that telling is the right thing to do; more information is always better than less. In my family, I have a nephew who has created a medical family tree (he’s a doctor); it has been very useful in terms of understanding the likely health threats as we’ve all gotten older. (For example: no breast cancers, anywhere. Nice to know.)</p>
<p>I think there is.</p>
<p>My husband’s family didn’t bother to inform us of a hereditary disease that runs in their family (and that can be discovered through genetic testing) until I was already pregnant with my first child. I was very offended at not having been informed earlier, and the testing was more difficult because I was already pregnant. The disease in question was something so severe that if we found out I was carrying a child with that disease, my husband and I would have agreed that abortion was the best option. By not telling me about the problem until I was already pregnant, my husband’s family put me in a position where if the genetic testing had been positive (it was not), I would have had to have a risky and unpleasant late abortion instead of a routine first-trimester abortion. </p>
<p>I’m still somewhat angry about this, as you can probably tell.</p>
<p>After my middle child had a tonsillectomy and experienced post-op bleeding, testing revealed that he had a very rare genetic disorder. The doctor said that each of my kids had a 50% chance of getting it. Turns out that all three have it! So does my husband. When we told his mom, she said, “OHHH, so that’s why I had problems after my tonsillectomy when I was a kid!” I spent a good bit of time collecting information to send to my husband’s brother and three sisters. They all chose to ignore it, much to my surprise. I do know that my SIL finally mentioned it to her doctor when she needed MAJOR surgery, to remove a tumor on her spine. Turns out she has a mild version of the disorder. I don’t think any of the other siblings or their total of eight kids have been tested, though. Whatever! I did what I thought was the right thing. I just hope none of them is involved in an accident that causes internal bleeding, because they could be in big trouble.</p>
<p>My mother has been suffering with chronic, debilitating chest pain for almost three years. Her doctors couldn’t find out the cause and had reached the point of claiming that it was psychological and were planning to cut off pain meds. Yesterday, she was finally diagnosed with late-onset lupus. Which is actually a pretty good diagnosis under the circumstances. One of the major symptoms is pleurisy, causing chronic chest pain. My mother isn’t the usual demographic for contracting this illness, so in all this time, it was never tested for. As a caucasian woman being diagnosed at this age, we were told lupus has a strong genetic component. After she was diagnosed, she told my niece, who told her that my brother (niece’s father) had been diagnosed with lupus a few years ago and that was the underlying cause of his very severe rheumatoid arthritis. Brother is not the usual patient for lupus, either, and was told (according to niece) that it is likely genetic. Brother never told mom that he had been diagnosed because SIL doesn’t like people to know his business. Which I understand, but when mom was undergoing tests, she had to fill out very detailed family history records and had this been listed it could have been tested for years ago and spared her needless suffering. I can’t stress enough how much pain she has been dealing with and there was an imminent threat of stopping pain meds because a cause for the pain hadn’t been found. Am I wrong in thinking that brother should have mentioned this to his family, particularly since he is almost completely incapacitated. He also has no biological children and only genetic relatives are mother, siblings and nieces and nephews.</p>
<p>Depends. If it’s something bad, yes, particularly if early detection means better management. If it’s something that can be screened for, yes.</p>
<p>I would certainly inform family members of genetic problems. Other family members could spend huge amounts of time, money and worry over problems when a letter or phone call could point them in the right direction.</p>
<p>I think it depends on the disease. Early-onset Alzheimer’s has a genetic component, but I don’t know if I’d even want to know if I had a high risk for that. What am I going to do about an incurable, untreatable disease?</p>
<p>zoosermom, if your brother knew that his mother was suffering, he should have said something. If it is genetic, he had to have gotten it from either his mother or father, so they should have been informed. It’s not like one of the might carry this genetic disorder, it is a given! It shouldn’t have been SIL’s call as she is not directly impacted.</p>
<p>I can see not saying something immediately to siblings or others who are less likely to be impacted, but how are we supposed to fill our complete medical histories without that information? My aunt had cervical cancer, and as far as we knew there was no family history. Grandparents lived to mid-90’s, and suffered from dementia only later in life; she died mid-70’s with significant dementia. We didn’t know until after my grandfather’s death that he wasn’t her father, but had adopted her. Her medical history had always been inaccurate/incomplete. Turns out her father died in his 50’s of cancer, and earlier dementia runs in his family.<br>
While I understand the idea of not wanting others to know your business, when it come to medical history it is their business!</p>
<p>scout59, one advantage of knowing that diagnosis would be that you and your family can make appropriate decisions regarding long-term care insurance and set up wealth transfers so that you don’t end up selling everything to be covered by Medicaid.</p>
<p>I think withholding genetic information that may help family members manage medical issues is selfish, shameful and just plain wrong.</p>
<p>MizzBee, I did all that in my 30’s - just that kind of planner, I guess. I didn’t need the specter of disease to force my hand! To me, long-term planning is something you do regardless of your genetic risk.</p>
<p>That is great, scout. From my experience with my mother and other families I meet in the nursing home where she lives too many people don’t bother with long-term care insurance. I will take any opportunity to preach about it.</p>
<p>Depends on how extended the extended family, and what exactly is the diagnosis.
I would talk to the counselor probably on how best to proceed.</p>
<p>I think there are a couple ways to think about this. If I were diagnosed with something I might not feel obligated to make a formal announcement to the family if it’s just letting them know it’s something thay may be susceptible to sometime in the future, although I do think it would be the right thing to do-- I think you can blur the lines there a bit between your right to privacy and your family’s right to know. </p>
<p>However, I have some mystery medical maladies that after several years we still have not been able to diagnose-- but with some family members help we have had theories and leads to pursue. Family history is such an important part of diagnosis for some very serious illnesses that might otherwise be difficult to diagnose. If one of my family members had information that could help me figure out what’s wrong with me and they withheld it, I’d be very upset. It’s not just some issue I might sometime face in the future, it’s my quality of life right this moment.</p>
<p>I think that if it s a serious genetic situation, it is the right thing to do to tell pertinant family members about it. “Pertinant” means using common sense. You don’t have to tell Grandmom who is hardly in touch with the world, for instance, or send notification to all of the kids, but it is something that all of the key adults should be told and they can then give the information to their close members. Somethings, where it can cause tremendous issues such as spinal muscular atrophy or other such conditions when a doctor out and out says that testing is in order for all child bearing aged family members, really should be conveyed, so that decisions can be made as to how to procede in terms of family planning.</p>
<p>A good friend’s twin sister died from a cerebral aneurysm. The doctor informed her that she and her other siblings and their kids should be tested because there was a familial component to this condition. This was an aneurysm that had no symptoms until too late</p>
<p>Friend had CT scan and found that she had several aneurysms–she had surgery to stabilize them. She has 2 other sisters and a brother. She informed her other sisters and let them know what happened to her and what the doctor recommended. She had a very difficult time informing her brother. This brother had borrowed a large sum of money from my friend and her husband and had lost it. They hadn’t spoken in 20 years. Friend couldn’t bring herself to talk to her brother, but she called his two kids and told them to get tested and to inform their father. It seems that with a diagnosis like this, it would be extremely important to share information. </p>
<p>I guess other situations depend on the diagnosis and the relationship between family members. I assume that if family members aren’t estranged, it might be easier to share the information.</p>