Return of Research Results: How Should Research Results Be Handled?

Knoppers B. M. Joly Y. Simard J. Durocher F. , “The Emergence of an Ethical Duty to Disclose Genetic Research Results: International Perspectives,” European Journal of Human Genetics 14, no. 11 (2006): 1170–1178.

Ravitsky V. Wilfond B. S. , “Disclosing Individual Genetic Results to Research Participants,” American Journal of Bioethics 6, no. 6 (2006): 8–17.

Wolf S. M. , “Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations,” Journal of Law, Medicine & Ethics 36, no. 2 (2008): 219–248.

National Cancer Institute - Office of Biorepositories and Biospecimen Research, Workshop on Release of Research Results to Participants in Biospecimen Studies, July 8–9, 2010, Bethesda, MD, 2011.

National Heart, Lung, and Blood Institute Working Group, “Ethical and Practical Guidelines for Reporting Genetic Research Results to Study Participants,” Circulation Cardiovascular Genetics 3, no. 6 (2010): 574–580.

This consensus statement was addressed during the National Institutes of Health Working Group Meeting IV, Working Group on Managing Incidental Findings and Research Results in Genomic Biobanks & Archives, Bethesda , May 20, 2011.

Organisation for Economic Co-operation and Development, Guidelines on Human Biobanks and Genetic Research Databases , 2009, at Article 1.H, available at <http://www.oecd.org/dataoecd/41/47/44054609.pdf> (last visited September 1, 2011).

European Society of Human Genetics, “Genetic Testing and Common Disorders in a Public Health Framework - Recommendations of the European Society of Human Genetics,” European Journal of Human Genetics 19, no. 4 (2011): 377–381.

Haddow J. E. Palomaki G. E. , “ACCE: A Model Process for Evaluating Data on Emerging Genetic Tests”? in Khoury M. Little J. Burke W. , eds., Human Genome Epidemiology: A Scientific Foundation for Using Genetic Information to Improve Health and Prevent Disease (New York: Oxford University Press, 2003): At 217–233.

Public Population Project in Genomics (P3G), available at <www.p3g.org> (last visited September 1, 2011).

Sweden , Biobanks in Medical Care Act (SFS 2002:297) and the proposed revision of the Act (SOU 2010:81).

Spain , Law 14/2007, of 3 July, on Biomedical Research.

Hayeems R. Z. Miller F. A. Li L. Bytautas J. P. , “Not So Simple: A Quasi-experimental Study of How Researchers Adjudicate Genetic Research Results,” European Journal of Human Genetics 19, no. 7 (2011): 740–747.

Bredenoord A. L. Kroes H. Y. Cuppen E. Parker M. van Delden J. J. M. , “Disclosure of Individual Genetic Data to Research Participants: The Debate Reconsidered,” Trends in Genetics 27, no. 2 (2011): 41–47.

Barabasi A. , “Network Medicine – From Obesity to the ‘Diseasome,’” New England Journal of Medicine 357, no. 4 (2007): 404–407.

See Hayeems , supra note 13.