National Academy of Sciences Workshop: Returning Individual Results from Genomic Research

National Academy of Sciences Workshop: Returning Individual Results from Genomic Research

National Academy of Sciences Workshop: Returning Individual Results from Genomic Research

"Guidelines for Returning Individual Results from Genomic Research Using Population-Based Banked Specimens" 

February 10-11, 2014

National Academy of Sciences Lecture Room
2101 Constitution Ave. NW, Washington, DC 20418

Register here.

Since 1991, the National Health and Nutrition Examination Survey (NHANES) has collected and stored genetic specimens. Among other considerations, this has raised the question of whether, when, and for which biologic measures the results should be reported back to individual respondents. NCHS developed an action plan for reporting individual results; however, because of potential costs and unintended consequences from respondents' reactions, the NCHS Board of Scientific Counselors recommended gathering further input from a wide range of perspectives. The National Academies of Science is convening this workshop to fulfill that goal.

The workshop agenda will address such issues as:

• How population surveys, such as NHANES and others, should implement the reporting of results from genomic research using stored specimens, identifying options for reporting and their advantages and challenges.
• In the context of ever-changing guidance in medical ethics for reporting results from genomic studies, how population surveys should address informed consent for future data collection, as well as implementing the return of results for banked specimens covered by informed consent that did not envision this possibility. Options will be identified and their advantages and challenges considered.

Registrants can attend the workshop in person or via WebEx. Visit the National Academies workshop page for agenda and logistics, including registration, directions, hotel, and transportation information. A transcript will be available post-workshop.

NCHS has implemented a moratorium on new research using genetic specimens in NHANES until this workshop has been held and its discussions absorbed. Needless to say, this is of tremendous importance, and the results will have far-reaching consequences for NHANES in particular, and population-based surveys overall.