This case study involves the ethical concerns of Direct-to-Consumer (DTC) genetic testing at Veritas Diagnostics, Inc. (VDI) from the perspective of an Ethics Officer. There are a number of recommendations that I have for VDI that will serve to protect its standing as a reputable, quality, and ethical company with this roll-out of DTC genetic testing, all of which I will discuss independently starting with legal requirements surrounding this industry.
There are some federal, international, and state laws that address DTC genetic testing that we must review and adhere to where applicable. None of these laws are “crystal clear”, but nonetheless do provide some guidance as to how DTC genetic testing should be offered to the public. The
…show more content…
We have to ask ourselves: Will this happen to us given the current safeguards we have in place and will our consumers be comfortable with their genetic information being reported to another consumer, to include their name? Likely not. Further to actively safeguarding DNA data that contains consumer’s names, we need to protect the de-identified data as well. There is also no legal transparency with regards to the de-identification of genetic data, so keeping personal data such as this private is imperative. In this technological day and age, we can share and store a myriad of information, including sensitive and personal data such as DNA, with the click of a button. Being so, it can be accessed and compromised just as easily if we do not take the necessary measures to protect it. Re-identifying genetic data after being de-identified is not necessarily a difficult task due to the nature of the information itself (unique to an individual). In order to protect our consumers’ privacy, I do not recommend storing their data through “cookies”, but instead through a protected database, and only with their consent to do so.
Regarding the storage of genetic data, the question arises as to who owns that data – the consumer or VDI or another entity? DTC companies may utilize genetic data in ways other than those intended by the consumer,