On November 20, MidPoint opened a discussion about genetics and health with our guests, Dr. Deborah Cragun, director of the genetic counseling program at the University of South Florida College of Public Health (COPH), and COPH Health Law Professor Katherine Drabiak.
Dr. Cragun discussed how the landscape of clinical genetics testing as initiated through a physician has expanded and become much more widely available, and with it, the challenges that may arise when a family member receives a medical diagnosis of a genetic condition. She explained that unlike commercial genetics testing, which is available through companies such as 23 & Me or Ancestry.com, medical genetics testing is protected under stringent medical privacy laws. Dr. Cragun indicated that the best use of genetic testing is as a medical clinical tool to diagnose health conditions that can be addressed with medical treatments or, perhaps, with lifestyle changes that could improve health outcomes. Although many of our listeners expressed interest in knowing their complete genetic profile, Dr. Cragun emphasized that genetic testing undertaken outside of a medical, clinical setting is very expensive, but within the clinical space, it is most often covered by health insurance and can be very affordable now. But, there are so many different, specialized genetic testing panels available now that a patient needs to be referred by a physician for specific genetic testing to obtain a medical diagnosis leading to a treatment plan.
Conversely, we learned from Ms. Drabiak that the more limited health information obtained from widely available commercial genetics testing companies such as 23 & Me or Ancestry.com is not as protected under the law. According to these companies’ Terms of Service, the client of these companies does not generally have control over the use of and who has access to the client’s private genetic health information. Although some laws do provide some protection for the private health and medical information maintained by these companies, there is a legitimate concern that the client’s information could wind up in the hands of bad actors or be used for purposes never intended when the client initially sought their service. Ms. Drabiak reiterated that it is important to read the fine print of the Terms of Service before submitting your genetic information to these companies.
The show is available for listening on demand here, on the WMNF app, or as a WMNF MidPoint podcast wherever you get your podcasts.
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