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Bioethicists Call For Privacy Protections For Personal Genomes

Would you like a genome with that?
Would you like a genome with that?

When a stranger can gain access to someone's entire genetic code by picking up a used coffee cup, it presents a whole new thicket of concerns about privacy and security.

Actually, we're already there, though we're still in the early stages of what's shaping up, after all the years of hype, as a genuine revolution. Just take a look at Rob Stein's recent series on the $1,000 genome to see how far we've come and where we're headed.

A sample of saliva taken from a coffee cup or a Q-tip is enough for technicians to reveal someone's genes, for better and for worse. Reuters' Sharon Begley points to EasyDNA, a California company, that's already doing ancestry, health and paternity testing on samples ranging from cigarette butts to licked stamps.

Against that backdrop, the Presidential Commission for the Study of Bioethical Issues just released recommendations on how the country should proceed along the genomic path.

Yes, whole genome sequencing may help refine diagnosis and treatment, though there are still plenty of technical and medical hurdles to overcome before that's commonplace.

Between now and then, safeguards are needed before whole genome sequencing becomes widespread, the commission says. In a letter to President Obama, the commission chairs say the group, "recommends strong baseline protections for whole genome sequence data to protect individual privacy and data security while also leaving ample room for data sharing opportunities that propel scientific and medical progress."

Some specific ideas from the commission:

  • Federal and state governments should establish a "floor of privacy protections covering whole genome sequence data regardless of how they were obtained."
  • Prohibit unauthorized whole genome sequencing without the consent of the person whose sample is being analyzed. (Hands off my coffee cup!)
  • The people who sequence your genome need to tell you up front that it's likely there will be potentially worrisome "incidental findings" in the results.
  • So-called incidentalomas are quite common when radiologists scan patients. Since everyone has genetic mutations, the whole genome sequences are bound to find something quirky on everyone. When obtaining your consent, the researchers, doctors or commercial genome sequencers need to explain when and how they'll tell you about those findings.

    Copyright 2021 NPR. To see more, visit https://www.npr.org.

    Scott Hensley edits stories about health, biomedical research and pharmaceuticals for NPR's Science desk. During the COVID-19 pandemic, he has led the desk's reporting on the development of vaccines against the coronavirus.