The Genetic Alliance recently posted a webinar featuring Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) Executive Director Lisa M. Lee. The webinar examined some of the ongoing and timely issues raised by to the Bioethics Commission report Privacy and Progress in Whole Genome Sequencing. Lee was joined by Kelly Edwards, Acting Associate Dean, Associate Professor, Bioethics and Humanities, University of Washington.
Lee said the purpose of this webinar was to “briefly review the findings, analysis and recommendations made in Privacy and Progress, as well as use recent news events to illustrate how the recommendations made by the Bioethics Commission are necessary and pressing matters.”
Three months after Privacy and Progress was released, Science published the study Identifying Personal Genomes by Surname Inference by Melissa Gymrek, et al. This study proved that whole genome sequencing privacy breach concerns are no longer hypothetical; researchers had successfully uncovered the full identities of 50 individuals. Lee also referenced a story about an artist who creates 3-D renderings of faces from DNA she sequences from items like chewed gum or cigarette butts found in public places. From the sequencing the artist is able to learn information about the unwitting donor like eye color, hair color, and other facial features.
Lee argued that both examples illustrate the need to implement the recommendations made by the Bioethics Commission, including the need for strong baseline protection while promoting the data access and sharing required for progress. Currently different states have various levels of protections in place. For example, in New York, where the aforementioned artist resides, it is legal to sequence whatever DNA might be found. Sequencing is legal as long as a person is not sequencing to find information such as a predisposition to a genetic disease or disability in the individual or the individual’s offspring. In Florida, this same act is illegal as state law says that the term “DNA analysis” means the medical and biological examination and analysis of a person to identify the presence and composition of genes in that person’s body. The term includes DNA typing and genetic testing. These examples also demonstrate the need for better data security and researcher accountability.
The Genetic Alliance, started the monthly webinar series, What about Privacy and Progress in Whole Genome Sequencing?, in February. The series is based on The Bioethics Commission’s report, Privacy and Progress in Whole Genome Sequencing. A webinar is held on the first Tuesday of every month, and the series will run through January.