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Do Your Family Members Have a Right to Your Genetic Code?

by Emily MullinMIT Technology Review
November 22nd, 2016

Illustrative image of DNA strands and molecules.

Untitled Document

When a woman gets her genome sequenced, questions about privacy arise for her identical twin sister.

In August 2015, Samantha Schilit went to her primary care doctor to get a blood draw. A PhD candidate at Harvard specializing in human genetics, she was itching to unlock the secrets of her genes with a test called whole-genome sequencing, which provides a full readout of a personís DNA.

Patients must give their informed consent before undergoing whole-genome sequencing or any other genetic test. But there are no laws that restrict what patients can do with their own genetic information, or that require patientsí family members to be involved in the consent process. This raises questions about who owns an individualís genetic code, since family members share many genetic traits and may harbor the same genetic abnormalities associated with certain diseases.

When Schilit got her test results back a few months later, she didnít consider that her identical twin sister Arielle Schilit Nitenson, a PhD student in neuroscience at Brown University, would have concerns about the test. The two co-authored an article in the Journal of Genetic Counseling about their experience.

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