That said, once the pathogenic results were *reported*, they have an obligation to inform the patient/parents. That patient can request their medical record at any time — under HIPAA — which would contain the full test result.

Even if my doctor accidentally runs a test on me, they have an obligation to return the results if they could affect medical outcomes (including reproductive choices).

So I assume that we may shelve any talk about Halachaic take on hereditary genetic risks in women in general, and risk-reducing surgeries in particular. But if you would like to have this discussion of the tradional religious law in the context of today’s medical genetics, then please let me know.

Back to the topic. Are you satisfied with the publications proving that drastic prevention strategies are commonplace in BRCA mutation carriers? I got a few more papers, if you’re still not convinced. And more importantly, I went to Be Bright Pink, the national advocacy group for young women with BRCA mutations, and noticed that their page on risk-reducing surgeries begins from a member testimony about how common these surgeries are. So yes, even in this specific world of young women with their specific concerns, the perception that surgeries may be a “when” rather than “if” doesn’t really change.

This test is a broad spectrum test and has the ability to diagnose all sorts of genetic conditions, even ones that might be unrelated to the current issue at hand. What would you like us to do with the additional information garnered from this test? Would you like to know the results? Here is a list of all the possible conditions your child will be tested for. Some of these do not have a treatment or a cure, others do. Some are serious, others benign. What information would you like to know?”

Done.

Of course the outcomes are strongly affected by age and prior experience with cancer in family members (or selves), and the %age ought to be smaller in young females w/o prior knowledge about cancer-related suffering and death, so both you and #3 might “claim a win” here (yes, the notion that “many people would consider to have life-changing implications” is true and supported by multiple studies, but of course the studies do not specifically address choices made by the underage cusomers of 23andMe as they mature).

if she can’t articulate her fears, one can still call it irrational. they may be right, but they are not based on rational calculation
Hmm let me try once again. I’m trying to say that she may have calculated the risks to herself, and to the well-being of the family, perfectly rationally, but couldn’t articulate her point of view without being conforntational / jeopardizing family peace. We all deserve a little private space in family relations. Not every closed lid needs to be pried open. Sometimes a guy can’t rationally explains why he wants to spend his time or money or affection this or that way, but you don’t call it irational. You’d suspect that he’s trying to avoid explaining away every minute details of his motivation and his train of thought, lest the lid blows off. Call it sneaky / protective / conflict-avoidance. But if a woman won’t explain every detail of her reasoning, then she’s just irrational. Yeah right.

I’m aware that as of yet I may have alleles which raise disease risk which I am not yet aware of. Still, the results paint a somewhat better picture than I was hoping for. I’ve been fairly suspicious that a lot of the weird neurological diseases in my family are due to some environmental contaminants, as people from both my mother’s and father’s side suffer from them, but only those which lived in their hometown, while relatives which lived in other places didn’t experience so many inexplicable symptoms and rare diagnoses.

vague. what % is many people? if you can’t give a good estimate, one wonders why we even generalize about the distribution.

#6, you’re talking about life insurance, right?

#7, well, if she can’t articulate her fears, one can still call it irrational. they may be right, but they are not based on rational calculations.

It’s not you as a person who got low genetic risks, it is a wide, heterogenous population of people sharing certain SNPs with you. Some people within this cohort actually have strong genetic predisposition to disease, but there are relatively few of them in the group.

It’s as if someone told you that houses in your city are at low risk of robbery, and you’re, like, great, my neighbor’s have been broken into, but I shouldn’t worry, the stats tell me so. Only the data aren’t granular enough, they don’t break the risk down block by block. Sure, it means that your city has fewer bad neighborhoods; but what if you just live in one?

She has some strange irrational fear
Counseling is important. And while health insurance or job discrimination is illegal, a kid could still be legally denied school admission as we know from this blog, and life policy discrimination is legal too. Then there may be undisclosed family history stigma, and of course nonpaternity. It is just so wrong to call someone’s concerns “irrational” only because they can’t articulate the issues.

I got my genome sequenced via 23andme. I was pleasantly surprised at my lack of major genetic health problems. I have a 25% increased risk of heart disease, but given I’ve been a vegan for sixteen years now (and a vegetarian for twenty) I presume if I continue my current practices, plus keep working out and don’t slide into obesity, it will at least cancel out the increased risk. Despite my family being peppered with lots of disease (type 2 diabetes, hypertension, Parkinson’s, Alzheimer’s, Multiple Sclerosis, some cancer, etc), I have normal or very low risks for all of these.

I can’t get my wife to be interested in sequencing sadly. Oddly, she only wants to do it if she goes on a site like ancestry, which does not offer any information about disease likelihood, and only gives genealogical information. Which would mean our genomes would be on different sites. My in-laws don’t know why she’s so crazy opposed.

She’s even more opposed to us getting our daughter sequenced. She has some strange irrational fear that health insurance companies will someday find the information and discriminate against her. I feel pretty strongly she should have this knowledge available to her, so we’re kind of at loggerheads. Hopefully she’ll lean towards my way of looking at things as an adult.

I also object to paternalism, but there are some practical matters to worry about as well. There are often areas where there is room for debate.

The current recommendation is for the kids to be told about the mutation at age 18 and for testing to take place at age 25-30, which is when breast cancer screening should begin in mutation carriers.