One current example of this ethical controversy was demonstrated in the 2018 announcement of 23andMe's partnership with the pharmaceutical company GlaxoSmithKline. In this deal, GlaxoSmithKline purchased a $300 million stake in 23andMe and in return 23andMe would allow the pharmaceutical company access to its biobank of genomic data for their pharmaceutical research. While these companies made this announcement in celebration of the opportunity for progress in pharmacogenomics and drug development, others were wary of the possible breaches of privacy that selling customer's personal genomic data may entail. Privacy concerns include incidental data sharing to third party companies, such as insurance companies or employers. Privacy concerns with genetic information also extend to family members of DTC customers, having similar genetic make-up to their family member who did consent to data sharing, although these individuals did not consent themselves. GINA protects against genetic discrimination in health insurance and employment; however, there are circumstances of exception. For example, GINA does not protect individuals from genetic discrimination in life insurance, disability insurance, and long term care or employees in companies with fewer than 15 individuals or in the military. DTC companies are not regulated in the same way as physician genetic testing and the disclaimers of data sharing in DTC companies is not as clear as medical biobanks, such as the All of Us project sponsored by the NIH. However, this does not necessarily mean that the intentions of DTC companies are nefarious. According to a qualitative study published in the Journal of Personalized Medicine, these companies can prevent the feared genetic discrimination from privacy breaches by advocating for updated policy to regulate data privacy and being intentional about only sharing genetic information to sources who intend to contribute to medical discovery with the appropriate ethical standards.
