Returning Research Results of Pediatric Genomic Research to Participants
Returning genomic research results to participants is rife with ethical issues, especially when the research participants are children. This study explores the legal implications of returning pediatric genomic research results to participants. By using standard legal analytic tools, study investigators are developing criteria to govern the ethical return of incidental findings and results of pediatric genomic research. US laws and international guidelines regarding decision making for and by minors are included in the analysis to provide a foundation for developing these criteria.
- Ellen Clayton, J.D., Ph.D., Principal Investigator
- Amy McGuire, J.D., Ph.D., Co-Investigator
- Bartha Knoppers, Ph.D., Co-Investigator
Supported by: R21HG006612, National Human Genome Research Institute, NIH
Publications Related to Genome Law and Policy
McGuire AL, Wang MJ, Probst FJ. Identifying consanguinity through routine genomic analysis: Reporting requirements. The Journal of Law, Medicine, and Ethics. 2012; 40 (4): 1040-6.
Clayton EW, McGuire AL. The Legal Risks of Returning Results of Genomics Research. Genetics in Medicine 14(4), 2012:473-477.
McGuire AL, Joffe S, Koenig BA, Biesecker BB, McCullough LB, Blumenthal-Barby JS, Caulfield T, Terry SF, Green RC. Ethics and genomic incidental findings. Science. 2013; 340 (6136): 1047-8.
Green RC, Berg JS, Grody WW, Kalia SS, Korf BR, Martin CL, McGuire AL, Nussbaum RL, O’Daniel JM, Ormond KE, Rehm HL, Watson MS, Williams MC, Biesecker LG. ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing. Genetics in Medicine. 2013; 15(7): 565-74.