May 24, 2011
Commission Chair Amy Gutmann, Ph.D., announced at Commission meeting #5, which was held this week in New York, that upon completion of the Commission’s work on Human Subjects Protection, the Commission would focus its efforts on the pressing problems raised by the emergence of genome sequencing as an addition to clinical care and genetic research.
The working title for the project is “Genes to Genomes: Collection, Use and Governance of Human Genome Sequence Data." A strong focal point for the Commission’s bioethical inquiry will be the fact that we now have more genetic information than we know what to do with. The scale of collected and available genetic data raises the bar on issues such as data protection, privacy, consent, and counseling. In addition, the increased volume of data amplifies the potential for use and abuse for nonmedical reasons. As part of Genes to Genomes, the Commission plans to address how human sequence information is collected and stored, what constitutes informed consent for genetic sequencing and when is it necessary, when should incidental findings and other results be reported (and to whom), whether and what kind of counseling is called for, along with a host of intersecting privacy issues. The target completion date for this project is mid-2012.
Following this project, Dr. Gutmann announced, the Commission will begin work on a project tentatively titled, “Neuroimaging and the Self”. For this study, the Commission plans to address issues related to notions of the person and the implications of advances in neuroimaging for these understandings, including the implications of related insights from neuroimaging and philosophy for moral and legal responsibility. The target completion date for this project is late-2012.
