CHICAGO — 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.”
The Food and Drug Administration classifies these tests as medical devices, but they also are a mechanism for massive information-gathering whereby personal, self-disclosed information, including a person’s genome, can be used by the company or third parties to sell products and services. However, unbeknownst to most customers this information can be used against them.
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.
The House of Delegates said information from the samples should be subject to federal guidelines that cover research on human subjects and recommended an “opt in” option to give consumers the conscious choice on how their information is used.
Law enforcement agencies requesting private medical information should be given access only through a court order that shows the need for the information outweighs the privacy interest.
“As physicians, we are bound by our ethics and the law to safeguard our patients’ health records. Mail-order tests, while not administered by physicians, are nonetheless health records. People should be aware of that—and so should regulators,” Dr. Madejski said.
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