Tell Siblings...or not? What are the ethics?

[Creekside]

I come from a large family. Now that I know I'm a 3/4, I'm wondering about whether I should/should not share that info with siblings.

On the one hand, some might choose to be tested and then take action. (They are all younger, so more time for action to be effective, potentially.)

On the other hand, this may be a Pandora's Box that some would choose not to open, but stressful knowing that it is potentially out there.

And on that mythical third hand, some might be unhappy that I didn't share my info in a timely manner.

Do I get a fourth hand? While health insurers aren't allowed to use genetic status for health insurance in the US, long term care insurance CAN use that info...and would be likely to deny a policy. (I already have one.)

Thoughts and musings would be most welcome.

[DaleBru]

I'm also 3/4 with a huge number of relatives due to my Pennsylvania Dutch background. This has been a big concern for me, and I hope you get a lot of responses. I decided to give each one a trigger warning, often by email or text to encourage a thoughtful response. This is what I told them:

**************
"I've learned some information about my genetics that may impact my future health. Since we're related, it might be relevant to you as well.

But some people want to know and some people don't want to know, for example with cancer screening. 

So I'm curious how you feel about it, and do you want me to tell you more about my situation?"
******************

I feel ethically compelled to at least offer the information to close family members. All of them thus far want to hear my story, but few want to actually do anything about it. I expect it will become more common, very rapidly, for people to learn about their genetic profiles, and I personally encourage it. I think the health concerns trump the privacy concerns. And I don't think we can put that genie back in the bottle.

About the insurance issue, if retired parents know their ApoE status, that can give some information to their children with little threat.

[mike]

I believe that if it is preventable (or at least delay-able) with life-style changes, then it seems to me that you owe it to them to say something. I would not just put it out there, I would also talk about what it means, with realistic increased risk numbers for 3/4 and 4/4, and with the life-style changes that are known to help your chances. You can get Dementia / AD without ApoE4, and you can also NOT get it even if you do have one or two ApoE4s. Explain to them how they can get tested, and that just because you have 3/4 doesn't mean that they have it - learn genetic probability so you can explain it. Provide resources for questions.

[donbob]

I told my brother I had my test results and I would reveal them if he asked. The condition was he had to read a pros/cons site on knowing. After one week he called back and requested my results. I gave him the info. Going through the same process with my adult children.

[Creekside]

Thank you. These are good strategies.

So many complexities with this issue.

[mike]

There is ever greater evidence that physical changes are happening in the AD brain decades before symptoms develop. My personal opinion, if you suspect a child could be 4/4, I would get them tested. I believe much of my current issues were the result of poor food choices as a child. Many will probably disagree, but I think 4/4 children (or at least young adults) should be on a low carb diet. Maybe not extreme, but trying to avoid added sugar except for the occasional treat. Avoiding processed food. Getting good fats and trying for a somewhat keto diet to help support the brain with extra energy to prevent early neuron death. I would loosen this a bit for 3/4s.

[Grace]

The condition was he had to read a pros/cons site on knowing.

Would you mind to share this site?

Thank you,

Grace

[donbob]

The condition was he had to read a pros/cons site on knowing.

Would you mind to share this site?

Thank you,

Grace

Sure. It is topic number 2 in the Wiki for this site. In that section is a link.

[CoachDD]

Great question and a topic that's been discussed before, so you can search in the history for more ideas.

Considering my health lineage (not good!), I honestly felt compelled (or maybe I should call it more of a responsibility) to let my siblings know. I did NOT get into details (3/4), but just alerted them to the fact that I had some genetic testing and know that I have the Alzheimer's gene. NOT ONE wanted to know more, although one of my sisters actually has had the 23 and Me test for a few months, but has not submitted it. My guess is they will all begin to ask questions in due time. Anytime we are together - which is most often around holidays - they joke about their memory issues. It's sad - and even a bit maddening to me. . .

I am the baby of 5 (and in my 50s) and my siblings are all dealing with some level of health issues. . . and certainly not taking care of themselves in any meaningful way. We've already lost my oldest brother to lung cancer about 3 years ago (age 59) and one of my sisters is currently in remission for the same thing (interestingly, not the same exact cancer type). My other brother had a heart attack at 54 resulting in a quad bypass and the last sister (two years older than me) is dealing with multiple health problems. The biggest concern I've had, which lead me down this path - is that heart disease runs rampant in my family. ALL of my aunts and uncles as well as my parents are gone. And aside from my brother, we've already lost 3 other cousins. There has only been ONE cousin out of 16 of us that's made it past the ripe old age of 60!! Most of the generation above us died in their 50s and 60s. Hence, I'm on a quest to beat the odds. My biggest challenge to date has been - Environmental Toxins!!

Interestingly, my niece (27) recently completed the 23 and Me test and I happened upon that when pulling up my own data. I spoke to her about it and she freely told me she has the gene (not sure if 3/4 or 4/4). She is somewhat oblivious/ignorant to what that means - but considering she's in the process of planning a wedding, I didn't want to expand on the subject. I intend to do that sometime in the near future and when the time seems right (??).

Some good news in all of this. . . my son (also 27) has completed the 23 and Me test and is a 2/3!!!!!

[JudyH]

I have the odd situation that I told one brother and not the other but there are special circumstances. I suspect our mother was e4/e4. That would make each of us carry at least one e4 and they are likely e3/e4 like me. I told my younger brother for a couple reasons, like me, he shows physical signs of IR. This is a big risk factor that would be helpful for us both to mitigate. Secondly, he has two children so this is something they might want to know later in their life. I do not know if my brother chose to be tested yet. We don't live very close so only see each other once or twice a year.
My older brother is single with no children and it is 2 years since his liver transplant. I am very familiar with his health and his biomarkers are all excellent with a new young liver. I don't believe he needs more medical thoughts or info added to his full plate at this time and he has to be very strict about any medications or supplements he adds to his regime.
I approached it very directly with the brother I did tell. The beauty of sharing the info is they still won't know what they are, they know what you are, and it is up to them to make a decision about getting tested and learning their own story.