Maybe you’ve seen the 23andMe commercial featuring the young woman exploring her heritage around the world, or maybe you know someone who learned about a genetic predisposition or found a family relation from the service. Maybe you’ve even used one of the kits yourself, swabbing your cheek and wondering what answers your saliva holds.
But what kind of implications does direct-to-consumer genetic testing have in the realm of big data? Each swab generates data on an entire genome, and when these companies aggregate across millions of customers, they create a gold mine of genetic data. As someone who has always been interested in the intersection of bioethics and technology, I often find myself pondering both the vast research potential and the serious ethical concerns associated with these products.
Certainly, direct-to-consumer genetic testing companies can have a substantial impact in the field of medicine. According to 23andMe’s head of privacy, most of the company’s consumers consent to make their data (anonymized and in aggregate) available for research. Consequently, researchers who partner with the company can investigate the genetic basis of various conditions and possibly even develop diagnostic tools or gene therapies. For such endeavors as well as genealogical ones, these products provide a diverse and valuable source of data.
Yet there is a flip side as well, related to the privacy concerns that we face more and more when discussing big data. For example, what if one of these companies got hacked and exposed sensitive medical information about customers or their families? If several of your relatives get tested, how much genetic information can be gleaned about you? Several researchers have also questioned how much anonymity these companies can ensure and have demonstrated the ability to identify the origin of “anonymous” genetic data.
Several approaches can work in tandem to mitigate these concerns and promote medical and genealogical discoveries while maintaining proper consumer protections. From a technology standpoint, direct-to-consumer genetic testing companies need to commit to continued bolstering of their cyber and data security practices to prevent hacks. From a policy standpoint, it is important to support and strengthen legislation like the Genetic Information Nondiscrimination Act to ensure that employers and insurance providers do not use people’s genomes against them. Additionally, companies like 23andMe ought to expand their informed consent practices to ensure that consumers understand that their genomes could possibly be traced back to them, and the potential negative consequences should their data fall into the wrong hands. Such measures would allow researchers to make use of the big data these companies generate while limiting harmful outcomes.
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