I’m concerned about the privacy implications of DNA testing services like 23andMe or AncestryDNA. What are the potential risks of sharing our genetic data with those companies, and are there any privacy-focused alternatives available?
In the US, insurance companies cannot discriminate based on your genetic data, contrary to what many people in the comments are saying.
https://www.hhs.gov/hipaa/for-professionals/special-topics/genetic-information/index.html
For now. The US is a victim of legislative capture by corporations and it’s possible that in the future lobbying by insurance companies will open the door to them using some of that data.
“The penalties for noncompliance with GINA range from $300,000 per incident when noncompliance is intentional and a minimum of $2500 to a maximum of $500,000, where noncompliance with the law is unintentional.”
It’s good that you were able to quote the regulations. You’re not wrong, I’m just apathetic; the question was more rhetorical. To be clear: I don’t have faith that this is strong enough to deter and/or that governing policies have enough teeth to enforce. I’d like to be wrong, but I’m not hopeful.
It just comes down to est. profit margin vs. risk and not some ethics about lawfulnes. If they think they can eat the fines/lawsuits then they’re going to take higher profits until the hammer drops. Especially if it shows short term gains for a publicly traded company.
That said, genetic data is probably not the biggest indicator of how much an individual will cost an insurance retailer (behavior would be better) and i’m not about to sift through HIPPA law to see all that it covers.
My bias here is based insurance company behavior from back when they could descriminate based on pre-existing conditions as well as how any publicly traded company eventually functions. Etc…
