It took three days, but I finally found a panel at BIO 2018 that addressed the current challenges in privacy and security regarding health data. This panel, Realizing the Potential of Clinical and Consumer Genomics, was focused on all the new genetic tests that are available (with more to come) and all the genetic data those tests are generating. I was particularly impressed with the approach of Mindstrong Health to privacy and security, which includes an advisory compliance panel that includes patients, bioethicists and legal academics, and promises to publish white papers on the subject.
But this wasn’t the end of the discussion. During this discussion, another panelist from a direct-to-consumer genetic testing company said his company had formed a privacy working group with three other personal genomics companies, and together they are working to redefine what privacy means in consumer genomics, what standards should be adhered to by their industry and, ultimately, what is necessary to secure informed consent.
I’m feeling better and looking forward to the final day of BIO 2018 on Thursday.