Duty to inform family?

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Verax
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Duty to inform family?

Post by Verax »

(Sorry if this has been discussed, I searched but couldn't find this topic, so starting a new one.)


1. Is there a legal or moral duty to inform family members of APOE4 carriers?
2. Should there be?
3. Should it override patient confidentiality?
4. Should doctors be legally allowed or even required to disclose genetic information to all family members?
5. Even when patients object?
6. Can patients be construed legally to have the same obligations and rights as doctors?
7. Should genetic testing companies such as 23andMe be legally required to notify family members of 23andMe customers' genetic test information that puts them at risk?
8. Have you as a member of Apoe4.info informed all family members of what you have been told about their risk?
9. Why or why not?
10. Would a decision in the UK case ABC v St George's change your mind about these matters?
11. Do you believe it possible or practical for courts to order doctors to distinguish genetic diseases such as HD from Apoe4?
12. Would it make a difference if there was a treatment or prevention for the genetic disease?

Robin McKie, 25 Nov 2018, "Woman who inherited fatal illness to sue doctors in groundbreaking case," https://www.theguardian.com/science/201 ... untingtons

Edward S Dove, "ABC v St George's Healthcare NHS Trust and Others: Should there be a right to be informed about a family member's genetic disorder?"
https://www.academia.edu/28616909/ABC_v ... c_disorder

Michael Parker and Anneke Lucassen, "Using a genetic test result in the care of family members: how does the duty of confidentiality apply?"
https://www.nature.com/articles/s41431-018-0138-y

Gillian Nycum, Bartha Maria Knoppers, & Denise Avard, "INTRA-FAMILIAL OBLIGATIONS TO COMMUNICATE GENETIC RISK
INFORMATION: WHAT FOUNDATIONS? WHAT FORMS?"
https://mjlhmcgill.files.wordpress.com/ ... savard.pdf

Wendy Nixson, "HAS THE RIGHT TO BREACH PATIENT CONFIDENTIALITY CREATED A COMMON LAW DUTY TO WARN GENETIC RELATIVES?" https://lr.law.qut.edu.au/article/download/693/620/
Anna
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Re: Duty to inform family?

Post by Anna »

The topic of disclosure has been discussed, but you're right, not much seems to come up during a search, including a thread I started awhile back: Thoughts on Disclosure (Who have you told?).
https://www.apoe4.info/forums/viewtopic.php?t=4562

Most of the discussion pertains more to the moral duty to inform or NOT to inform. Many people do not want to know their ApoE status. I am not aware of any legal duty (in any country) to inform ApoE4 carriers. But I do know that some members learned that they are carriers when doctors ran the genetic test without their consent. I sure hope that practice is not legal!

I think it is important to keep in mind the fact that ApoE4 is not a disease.
~Anna
4/4 but so much more
Verax
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Re: Duty to inform family?

Post by Verax »

As part of the Generation 2 prevention clinical trial, I was told my E3/E4 test results by a physician along with the required brief encounter (over the phone from Amsterdam) with a certified genetic counselor.

She didn't really add anything to what 23andMe had told me about my risk, perhaps 20-30% for LOAD, as a man, 74, over the next 10 years.

She mentioned heritable risk to my family but I honestly don't remember what she said.

I am college-educated and, similar to the subjects in the Boston REVEAL trial, I was not upset (much) by the disclosure. (JulieG, comment?)

Problem was, when I tried to disclose to my family, they could not entirely grasp the risk as probabilistic instead of binary.

Even worse, after I passed all the cognitive tests and no amyloid on the scans, the genetic testing seemed irrelevant to them--again, it was binary, like with the Huntington Disease repeat mutation.

It turns out this is normal, but it calls for a new paradigm of disclosure and communication of genetic risk, leading with AD.

There needs to be a new paradigm of disclosure so that we all can share results and data such as Apoe tests, such as in this forum, to take informed action to prevent or delay AD and other polygenic disorders.

Michael Arribas-Ayllon, "The ethics of disclosing genetic diagnosis for Alzheimer's disease: do we need a new paradigm?"
British Medical Bulletin, Volume 100, Issue 1, 1 December 2011, Pages 7–21, https://doi.org/10.1093/bmb/ldr023
https://academic.oup.com/bmb/article/100/1/7/271695

The old model based on HD won't work here. ABC in the court case cited above was concerned with a highly predictive test for HD and considered abortion as a binary decision based on the hidden result.

We have been too much concerned with discrimination after disclosure. That is appropriate with a deterministic disease such as HD, mutations are fate. That is not so appropriate with AD, we can and should do something to modify fate, and we need help instead of hiding it.

I told my eldest daughter, my study partner, that if I knew when she was a fetus she was 4/4 I would not have considered abortion, I loved her just the way she is. Then I asked her if she would have agreed. What do you think she said?
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HeatherLst
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Re: Duty to inform family?

Post by HeatherLst »

You’re neglecting one aspect: many people simply do not want to know. My family knows I’m APOE 4/4. By extension this means that they each have at least one 4 themselves. But even though they’re intelligent people, they’ve not grasped that concept. It isn’t something they want to know—at least, not right now.

Many friends and I have had a similar discussion—would they want to know? Many don’t. The same is said for cancer genes, or others. They don’t want to know. I don’t understand, as I feel information is power—but it’s their choice to make.

As of now no, I do not think companies should be required to inform others. I’m not worried about discrimination, but it is MY private health information. I am willing to share it with those who ask, but it remains under my control. Consent of medical records goes beyond just giving out my personal info, though. You can’t give someone THEIR medical info without their consent. They have to apply for it and seek it. Without their consent, you cannot just hit them with it out of the blue.


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