Comment by dekhn 3 days ago
I took an alternate approach: my genome is freely available: https://my.pgp-hms.org/profile/hu80855C
When I was sequenced, a bunch of genetic counselors at Illumina analyzed it and said they couldn't find a single gene mutation that was linked to increased risk of disease, which was a surprise to me but is really absence of information rather than information of absence.
What if they live in a country in which genetic evidence of a disease can deny or significantly increase the cost of health coverage? Even if you're clear of those for now, a new marker may be discovered tomorrow. Apparently (according another commenter) Life Insurance /can/ legally look at this even in the US. What about employers? What if it puts them on the DNA-evidence hook for a "crime" in their jurisdiction which you and they don't think is an ethical law (evidence of homosexual activity in a country that imprisons for it, or worse).
The crime thing sounds like a huge stretch given it's not actually your DNA.
With the insurance example I'm not sure I have a problem with that? The whole pre-existing condition conversation around health insurance is totally out-of-whack. Insurance was not designed for things you know have happened. It was invented to reduce the downside of things that could happen, commensurate with the risk of that thing happening. It's risk management. It makes zero sense to apply that model to something like universal health coverage. If someone is 100x more likely to get cancer, their insurance premiums should be higher. Just like if I'm a ship captain sailing into the bermuda triangle my premiums should be higher than sailing around the mediterranean.
If you feel that everyone should have healthcare, utilizing health "insurance" for this is the worst of kludges.
Similar experience here, was WGS and running the results against ClinVar came up empty[1] for known disease causing variants. Was not expecting that at all.
But I totally think this is more an absence of information than anything else. We all have a ton of de novo variation and that stuff is not going to be found in the databases.
1. Am carrying two recessive variants linked to a couple extremely rare developmental disorders (prevalence in live births of less than 1 in 10,000,000)
This is very unethical and you should be ashamed of yourself. You leaked 50% of your direct relatives here, 50% of any future or current children you have. Did you ask them for consent?
Perhaps my ethical framework does not match your framework? Note that I start from the premise that genetic data is not possible to keep secret (you shed skin cells in public, state-level agents can get warrants to grab a cup you used from the garbage, etc).
(no, I did not ask my children or my spouse or my parents or any other relatives for "consent").
Nothing is possible to keep secret if you're talking about state level agents combing through your garbage obviously.
But do you think there might be a difference between leaving out a cup of coffee you drank from versus publishing it and advertising it online?
You know for certain people won't ever face discrimination or other negative things based on their DNA? Where does this confidence come from?
The problem with publicizing genetic information is that you're defacto publicizing large amounts of the genetic information of your relatives, who may not be in a life situation where publicizing it carries no risk. This is also an objection many have to 23andMe.