Genetic privacy: Who should know what your tests reveal?

UK Biobank Centre
Blood samples taken from volunteers are labeled and ready to be stored in the UK Biobank, all controlled by robotics on April 17, 2007, Stockport, England.
Getty Images/Christopher Furlong

Genetic tests are giving patients unprecedented insights into conditions that they could inherit, but should this information be made available to other family members who might also be susceptible?

On The Daily Circuit, we discuss the tension between awareness and privacy in genetic testing.

Susan Wolf, professor of law, medicine and public policy at the University of Minnesota joins the discussion along with Dr. Robert Green, a medical geneticist at Harvard Medical School.

From Science Friday:

"The existing standard in clinical practice right now is that the wishes of the individual patient in front of you supersede your duty to contact the family," Green explains. "You can certainly apply a lot of [pressure]; you can sit down with them and explain; you can give them letters to hand the rest of the family. But it's not considered unethical at this point in time to keep the information private at the request of the patient. In fact, it would probably be considered unethical to disclose it to family members without the patient's permission."

That's even true when information can be vital for for the health of family members. "Let's say a researcher is doing a genetic study ... and they discover that their participant has a variant of the BRCA gene, associated with higher risk of breast and ovarian cancer," says Susan M. Wolf, the McKnight Presidential Professor of Law, Medicine and Public Policy at the University of Minnesota. "They go to that person and say, 'We think it's important for you to know this, but we're also concerned about your sister, or your brother, and other members of your family.'"

Do you think your genetic information is private? Does that change when a serious and inheritable disease turns up? Leave your comments below.

Before you keep reading ...

MPR News is made by Members. Gifts from individuals fuel the programs that you and your neighbors rely on. Donate today to power news, analysis, and community conversations for all.