November 19 - 21, 2013
Returning Genetic Results in Biobanks : Opening an International Dialogue
- Koening Barbara
Whether or not to provide research results or incidental findings to participants whose specimens and/or data are collected in research biobanks is a matter requiring urgent policy attention. Biobanks and research repositories are beginning to address the issue. Considerations include researcher/clinician duties, appropriate informed consent, and defining clinical actionability. With the expansion of genomic research, including collaborative research and cross-border data-sharing, debate over return of results and incidental findings is already international. The debate has crossed the divide between the research and clinical world as well. The American College of Medical Genetics and Genomics and the European Society of Human Genetics have released recommendations on how to address incidental findings in clinical genome and exome sequencing, creating controversy and challenging the separation of clinic from research lab. Comparative work is sorely needed to allow development of sound policy and best practices grounded in a diversity of experiences and global perspectives, and to promote international harmonisation.
This invitational Workshop will bring together 31 leading researchers and scholars from around the world, all experts in the ELSI of genetic technologies, feedback of results, and biobanking. The Workshop will explore the issue of feedback of incidental findings and results to research participants. It will also enable international and comparative dialogue on the cutting-edge issue of feedback of findings to a participants family and genetic kin, including after the participants death. The Workshop agenda includes: 1) short panel presentations by relevant experts with extensive time allotted to group discussion; 2) brainstorming and discussion sessions, 3) sessions focused on developing policy and publications and 4) group meals and coffee breaks that will allow for informal networking and collaboration. This Workshop will immediately enrich the scholarship of those participating, will enhance the work of ELSI 2.0 for Genomics and Society, the U.S.-based Return of Results Consortium/CSER ELSI Working Group, and H3Africa; will publish a set of papers comparing international approaches to return of results and incidental findings; and will create rich online international resources to support development of sound policy and practices in the global genomics community.
Funding for this workshop is provided by the Brocher Foundation, the National Institutes of Health, the Wellcome Trust, and the Swiss Academy of Medical Sciences.