Data Sharing

The internet has made DNA testing a big global business. In the United States and Europe, millions of people have sent samples of their saliva to commercial labs in the hopes of learning something new about their personal health or lineage. Ancestry.com, 23andMe, MyHeritage, and FamilyTreeDNA are all industry leaders that sell their services online, share test results on websites, and even provide guides on how to find relatives in phone directories or share results on social media. They frequently claim ownership of your genetic information and sell access to their databases to large pharmaceutical and medical technology firms.

According to a survey from The Pew Charitable Trusts, 81%t of adults surveyed favor improved patient and provider access to health information. More than two-thirds of consumers want their clinicians to share health information that isn't presently required by federal data-sharing policies (Trust, 2021).

An article posted in the Journal of the American Medical Association identified that some of the highest-ranking health apps used to assist people with mental health conditions (e.g. depression) and smoking cessation were sharing data with Facebook and Google services and that only a third disclosed such practices.

From the HHS Office for Civil Rights website: Ask your doctor. You have the right to see and get copies of your health information - PDF. In most cases, you can get a copy the way you want it, such as by e-mail. While your doctor normally has up to 30 days to provide you a copy of your information, your doctor often can provide the information much sooner than that. If your doctor offers a web portal, you may be able to easily view and download your health information whenever you want.

Abstract from the Bllomberg article: "Your genetic code includes details about not only your own health and family, but also similarly intimate information about your relatives. When police recently used a genetic genealogy website to find a suspect in the case of the Golden State Killer, it illuminated the unexpected ways that your genetic data can be used by people you had no idea you were sharing it with."