Education, Not Regulation, Will Benefit Consumers of Recreational Genetics
This commentary in the Genomics Law Report’s ongoing series What ELSI is New? is contributed by Blaine Bettinger, Bond, Schoeneck & King and publisher of The Genetic Genealogist.
Genetic ancestry testing, the use of DNA to explore an individual’s recent or ancient genetic contributors, has been available to customers for almost a decade but has recently been a topic of much debate among bioethicists. The concerns often center around topics such as privacy, definitions of race, and emotional or psychological effects of test results, among others. These concerns, together with continuing advances in personalized genomics that have the potential to make our DNA an important part of how we shape our identity and interact with society, lead to the question of whether recreational genetics should be regulated in order to prevent any potential harms to consumers. Or, as some argue, will regulations hinder the field without providing any real benefit?
Although perhaps not the most important ethical or social issue faced by the field of personal genomics, it is a concern shared by many of the estimated 1 million people who have purchased a genetic ancestry test to date. Genetic genealogy was the first branch of personal genomics to develop into a commercial product, and many who have benefited from testing vehemently oppose any regulation which might hinder an individual’s ability explore his or her own DNA.
There are indeed ethical issues faced by the field of genetic ancestry testing, but the solution to these issues, as with so many other aspects of personal genomics, is education rather than regulation. It is impossible for every consumer to be an expert, and as a result genetic ancestry testing companies must continue to make every effort to educate them. Many of the ancestry testing companies provide their customers with the relevant research and resources necessary to make sense of the results, but educating the consumer cannot solely be the responsibility of the companies. Our education system currently provides most students with only a cursory examination of genetics and fails to provide them with the tools needed to understand and evaluate even the most basic science underlying personal genomics. With the potential for personal genomics to revolutionize healthcare and play an important role in so many other fields, it is vital that everyone possess these tools.
Although the push for regulation is admirably aimed at preventing consumer harm, regulation will likely not provide consumers with the one thing they need most as they face a world changed by personal genomics – education.
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Well put! I agree and am working in this direction – at least with respect to mental health and personal genomics. Am loving your blog!!!
I am a consumer of both genetic genealogy services and of the health related consumer genetics. I am an administrator of a surname project that uses Y-chromosome data. I have an advanced science degree but not in genetics (it was my favorite biology course in college). I agree that most people have a rather poor background in science in general and genetics in particular. A better educated consumer will find their personal genetic information more interesting and understand the limits of conclusions that can be drawn.