Document Type
Article
Publication Title
University of Memphis Law Review
Publication Date
2019
Volume
49
First Page
759
Abstract
(Excerpt)
The ethical issues implicated by the misuse of genetic information have been smoldering for over half a century, and the age of big data has turned them into a five-alarm fire. In recent years, medical researchers and commercial enterprises have been using technological advancements to develop a variety of innovative ways to use genetic information. For example, it is becoming increasingly common for people to learn more about their health and family history by paying direct-to-consumer (“DTC”) companies to analyze their genetic data. DTC companies store the results of these tests electronically and often share them with pharmaceutical companies conducting medical research on some of the world’s most serious diseases. The research conducted with this data could yield tremendous benefits, but it also raises very serious privacy concerns. This is so because although DTC companies remove a significant amount of personal information from the genetic data shared with third parties, some personal characteristics—e.g., age, sex, birthplace, and more—must remain attached to the genetic sample for it to be useful in medical studies. As researchers have demonstrated, the identity of “supposedly anonymous genetic samples” can be revealed relatively easily. Many people would not be alarmed if secure medical laboratories used their semi-anonymized genetic data, but the reality is far more concerning. Hackers frequently attack large dossiers of health information, like those maintained by DTC companies, because such information is very valuable on the black market and guarded by low levels of security. If this genetic information is sold to unauthorized parties, used as blackmail, or held for ransom, the autonomy of the individuals associated with the genetic data could be significantly harmed.
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