There are a couple of protections, the biggest being the genetic information non-discrimination act. This act prohibits health insurers and employers from discriminating against people based on their genetic information. Your APOE4 status, your PS1 status, if you have on-set Alzheimer’s gene variation in your family, your family history – all protected under this act. This act however only deals with employment and health insurance. It does not deal with life insurance and most significantly does not deal with disability insurance or long term care insurance.
Your protections, when it comes to companies like 23andme, are limited and they include whatever protections are in the agreement with the company. This allows them to share and sell your data to other researchers at their will.
How much as a consumer are we protected with our personal data if we do get a genetic test?
By
Being Patient
| October 21st, 2020