AMA calls for privacy guidelines governing mail-order DNA tests; American Medical Association (AMA), November 16, 2021

American Medical Association (AMA); AMA calls for privacy guidelines governing mail-order DNA tests

"Taking a cheek swab and sending it to a mail-order DNA testing company takes only a few minutes, but the information might live on forever—and become widely available.

At its Interim Special meeting, the American Medical Association (AMA) House of Delegates expressed concern that the privacy laws governing genetic information do not apply to these over-the-counter tests. The AMA will work with federal agencies to strengthen the privacy safeguards.

“People curious about their ancestry shouldn’t be worried that the data extracted from saliva will be shared,” said Thomas J. Madejski, M.D., a member of the AMA Board of Trustees. “This can have serious consequences, and again highlights the need to demand privacy for health care records, even seemingly innocuous ones.”...

While federal law prevents health insurance companies and employers from discriminating based on genetic information, these restrictions do not apply to life, disability, or long-term care insurance companies, which can result in insurance application rejections. Users of consumer genetic testing should be advised of the potential risks of their participation.

The AMA will advocate to add long-term care, life, and disability insurance to the federal law overseeing genetic testing. The AMA also will support privacy standards that would prohibit pharmaceutical companies, biotechnology companies, universities, and other entities with financial ties to genetic testing companies from sharing identified information without the consent of the tested individual."