361–370 of 372 posts
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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?
Even assuming you had a point, which I don't believe you do, it wouldn't be your place to decide this.
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Closest competitor does a lot of heavy lifting in this situation. Ancestry is the overwhelming leader in the find long lost relative space/your "roots" space. Look at https://www.ancestry.com/ and https://www.23andme.com/ 23andme has basically given up on this part of the business. Their pitch is health. But that pitch is murky with no good hook to keep you hooked for a monthly subscription. So after they get the ini…
> leader in the find long lost relative space/your "roots" space. Acknowledging Ancestry.com are well ahead of the market here, but I never got their appeal of finding some long-lost second cousins... basically strangers, and saying, "hey, isn't it fascinating that we share some arbitrary level of common genetic makeup". If some randomer reached out via email to me doing this big reveal I'd be "thanks, but into the s…
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Thanks for the AMA. I want to get my genetic data, but, like obviously I don't want to go through one of these services where they ingest all that data and keep it around forever. Honestly, I'd like to be the only person with access to it and I can destroy it at will. Tough requirements, I know. Anyways, do you know of any services that meet those reqs? Any good DIY ideas? Again, thanks for the AMA
I didn't follow competitors too closely, but Color may be what you're looking for. I don't know if they sell direct to consumer though. If you use 23andMe, and request data deletion, they will do a best effort to delete the data. It's part of their GDPR requirement. When I was there, I worked on this project and they put a lot of effort into it. A big chunk of engineering org focused GDPR compliance for a month or tw…
Message I received by email:
> 23andMe and the contracted genotyping laboratory will retain your Genetic Information, date of birth, and sex as required for compliance with legal obligations, pursuant to the federal Clinical Laboratory Improvement Amendments of 1988 and California laboratory regulations.
> 23andMe will retain limited information related to your deletion request, such as your email address and Account Deletion Request Identifier, as necessary to fulfill your request, for the establishment, exercise or defense of legal claims, and as otherwise permitted or required by applicable law.
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Do you have knowledge of sensitive data being sold to third parties?
Not directly, afaik they never transferred the data. However they sold access to the data to a bug pharma company (GSK). This was widely publicized. Not sure if that counts: GSK had some ability to look at the data but didn’t have an on premise copy of it. Also, I worked on the GDPR deletion project. I can attest that they do best effort to delete your data when your request that. At least when I was there, this was…
For example, data that is merely disassociated with your account but will forever live in their system.
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Where are we at in terms of being able to use genetic info for treatments and lifestyle improvements?
As usual: “It depends’. Data on gene variants related to the first steps in drug metabolism can be quite useful both at home and clinically—e.g, your own responses to ethanol, caffeine, and many over-the-counter and prescribed drugs. St Jude Children’s Research Hospital routinely genotypes/sequences children before drug treatments to optimize initial doses. It makes a huge difference in outcomes for most cancer patie…
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> leader in the find long lost relative space/your "roots" space. Acknowledging Ancestry.com are well ahead of the market here, but I never got their appeal of finding some long-lost second cousins... basically strangers, and saying, "hey, isn't it fascinating that we share some arbitrary level of common genetic makeup". If some randomer reached out via email to me doing this big reveal I'd be "thanks, but into the s…
My mom (70year old boom) is obsessed with it. I think she is unhappy that our family line will likely end with me. (only child, who is almost a 40 year old virgin) If you don't get to see the future you want, consume your time with the past.
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For example?
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 whi…
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.
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I didn't follow competitors too closely, but Color may be what you're looking for. I don't know if they sell direct to consumer though. If you use 23andMe, and request data deletion, they will do a best effort to delete the data. It's part of their GDPR requirement. When I was there, I worked on this project and they put a lot of effort into it. A big chunk of engineering org focused GDPR compliance for a month or tw…
I requested deletion of all my data to 23andme, but they said they keep “Genetic Information”. Does that mean 23andme still has my “SNPs”? (I’m based in Europe) Message I received by email: > 23andMe and the contracted genotyping laboratory will retain your Genetic Information, date of birth, and sex as required for compliance with legal obligations, pursuant to the federal Clinical Laboratory Improvement Amendments…
The statement is pretty vague, and it’s hard to know what it means on a technical level.
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Closest competitor does a lot of heavy lifting in this situation. Ancestry is the overwhelming leader in the find long lost relative space/your "roots" space. Look at https://www.ancestry.com/ and https://www.23andme.com/ 23andme has basically given up on this part of the business. Their pitch is health. But that pitch is murky with no good hook to keep you hooked for a monthly subscription. So after they get the ini…
> 23andme has basically given up on this part of the business. The routine emails I get about them allegedly finding new DNA relatives suggest otherwise. The DNA relatives feature is also still pretty prominent in their UI (at least on desktop browsers; haven't looked at the app yet). That said, it certainly doesn't offer much beyond "these are your relatives; send 'em some messages or something lol". Ancestry probab…