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Privacy issues and genetic information

Genetic information is considered to differ from standard medical information in several ways. It can reveal much about an individual's potential for future health problems (ex: types of cancer, cardiovascular disease, diabetes, neurodegenerative disorders, depression, etc) and this is likely to be even more true in the future than now. To some extent it may reveal other personal characteristics or tendencies (ex: behavioral).

Clinical information (from the medical record) that is linked to a tissue sample is often limited to that which is related to the diseased tissue. It also may represent only a "snapshot" in time — at the time tissue was collected, unless the patient consents to longitudinal collection of medical data. But the genetic information in the tissue pertains to other diseases as well, and bears on the individual's entire lifetime.

In addition, an individual's genetic information is partially shared with his/her biological relatives. In that sense it "refers to" more than just the person who donated the sample.

This raises a challenge to individual informed consent. According to current views, an individual has no obligation to protect the genetic privacy of a relative by refusing to find out genetic information about him/herself. Hence, an individual's right to know his/her medical information trumps a relative's right not to know about genetic information about him/herself.

Because of the lack of federal genetic privacy and non-discrimination legislation, many people are wary about access to, and potential misuse or abuse of, their genetic information. For example patients may be concerned about potential loss of insurance or denial of future insurance, employment discrimination, or even unwanted solicitation for products (ex: pharmaceuticals) or additional studies based on their genetic status.