23andMe: The Ethics of Genetic Testing for Neurodegenerative Diseases

by Liana Meffert

The following post is part of a special series emerging from Contemporary Issues in Neuroethics, a graduate-level course out of Emory University’s Center for Ethics. Liana is a senior at Emory University majoring in Neuroscience and Behavioral Biology and Creative Writing (poetry). She is currently applying to Public Health graduate schools and considering a future in medicine. In her free time she enjoys running, reading, and her research on PTSD at Grady Memorial Hospital.

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The face of genetic testing and counseling is in the midst of a major overhaul. Historically, a patient had to demonstrate several risk factors including familial and medical health history or early symptoms in order to be tested for the likelihood of developing a neurodegenerative disease. For the first time, the public has unrestricted and unregulated access to the relative probability of developing certain neurodegenerative diseases.

So why is finding out you may develop a neurodegenerative disease in later years different than learning you’re at high risk for breast cancer? Neurodegenerative diseases are unique in that they essentially alter one’s concept of “self.” Being told you may succumb to cancer at some point in your life is a much different scenario than being told your memories will slowly deteriorate or that the way you relate to your loved ones, or even the very things you enjoy, may change. For the first time in history, the potential for these drastic changes in your “future self” are available at the click of a button.

“23andMe” was* one such DTC (Direct-to-Consumer) genetic testing service providing information for individuals to learn about and explore their genetic susceptibility.