I just attended the National Society of Genetic Counselors Annual Meeting in Salt Lake City, UT where I met some of the brightest minds in genetics, heard about mind-bending new technologies, and was reminded of the many ways that genetic counseling and testing is improving health, transforming lives, and driving precision medicine forward.
With that bright promise freshly in mind, several recent stories have cast a stark reminder of the ways genetic testing can, and is, being used nefariously. I published an article on this topic just a few short weeks ago and didn’t foresee that it would need a ‘part II’ so soon. Consider the following:
- The Trump administration already announced that they would require DNA samples from asylum-seekers at the Mexican border for rapid DNA testing to confirm family relationships. In a move called “transparently xenophobic in its intention,” the Trump Administration now plans to collect DNA from individuals in federal immigration custody and add those samples to the national FBI crime database.
- A recent genetic study on homosexuality raised eyebrows for many reasons, including that it appeared that homosexuality was being positioned as a ‘condition’ or worse yet a ‘disease’ to study and understand. An informative DNA Exchange blogpost by certified genetic counselor Austin McKittrick eloquently outlined the issues, including that the study utilized data from the UK Biobank and 23andMe. Consumers consenting to 23andMe research studies may falsely believe that their data are being used only to further critical health care problems, like finding a treatment for Parkinson’s disease, rather than for research that could potentially lead to discrimination or stigmatization of groups of people. Within days of this research being published, an app called GenePlaza was developed that, for about $5, could tell you ‘how gay you are.’ Can you imagine this app being used at a middle school slumber party, with results posted to social media? But worse yet, the app’s developer is based in Uganda, a country that announced plans that it would make homosexuality punishable by the death penalty.
Now, for just a moment, think about these three developments in unison. Our government is requiring DNA collection for immigrants in custody, and those samples will enter our federal crime databases. Large databases, even for consumer entertainment, are subject to search warrant. Genetic data are being collected and used to make associations (accurate or not) to a trait that may be punishable by death in some countries.
If we have been waiting for a sign that we need federal or international protections for genetic data and how it can be used, we now have that sign.