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Defining Research Needs and Assessing Implications for Research Following the Release of the ACMG Recommendations for Incidental Findings in Clinical Genome Sequencing

February 18-19, 2014
Rockville, Md.
The National Human Genome Research Institute (NHGRI) held a workshop on February 18 and 19, 2014 to discuss the potential implications of clinical sequencing recommendations and guidelines for genomic research, in particular the recommendations from the American College of Medical Genetics and Genomics (ACMG) on the management of incidental findings when patients undergo clinical exome or genome sequencing.
The objectives of the workshop were:
  1. To discuss key questions and challenges in determining the role of clinical recommendations in shaping research policies (in this case, addressing to what extent the clinical ACMG recommendations have an impact on the conduct of genomic research), and
  2. To inform NHGRI about what the Institute should consider in developing a normative and scientific research agenda and a policy agenda relating to the return of incidental findings in clinical and research settings.  
Workshop Summary
Workshop SummaryPDF file New
The meeting was designed as a forum for discussion, rather than a series of didactic presentations.  While speakers and moderators were asked to provide some background and lead the various sessions, discussions were informed by all of the participants in the room. See: Full Agenda
Roster of Participants
Workshop attendees represented academia, government, health care professionals, institutional review boards, the Presidential Commission for the Study of Bioethical Issues, professional societies, and the UK Biobank. See: Roster of Participants
Background Materials
  1. ACMG Recommendations for Reporting of Incidental Findings in Clinical Exome and Genome Sequencing (Green, et al., 2013)
  2. Incidental Findings in Clinical Genomics: A Clarification (ACMG 2013)
  3. Anticipate and CommunicatePDF file
    Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts (Presidential Commission for the Study of Bioethical Issues, 2013) 

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Last Updated: May 5, 2014