Return of Results: Towards a Lexicon?

See Public Population Project in Genomics (P3G), “Study Catalogue,” available at <http://www.p3gobservatory.org/studylist.htm> (last visited August 29, 2011).

See World Medical Association (WMA), World Medical Association Declaration of Helsinki, Ethical Principles for Medical Research Involving Human Subjects , Seoul, 2008, at Recommendation 30, available at <http://www.wma.net/en/30publications/10policies/b3/index.html> (last visited August 29, 2011).

See Centre for Society and Genomics, Always Expect the Unexpected: Legal and Social Aspects of Reporting Biobank Research Results to Individual Research Participants , Nijmegen, 2009, at 18, available at <http://www.society-genomics.nl/uploads/media/Always_expect_the_unexpected.pdf> (last visited August 29, 2011).

See UK10K, Wellcome Trust Sanger Institute, Ethical Governance Framework , Hinxton , 2010, available at <http://www.uk10k.org/assets/EF_UK10K_v21.pdf> (last visited September 9, 2011).

See UK Biobank, UK Biobank Ethics and Governance Council: Review 2009, London, 2010, at 7.

See UK10K, supra note 4, at 7.

Id.

See National Bioethics Advisory Commission (NBAC), Research Involving Human Biological Materials: Ethical Issues and Policy Guidance , vol. 1, Rockville, MD, 1999, at 72, available at <http://bioethics.georgetown.edu/nbac/hbm.pdf> (last visited August 29, 2011).

See Council for International Organizations of Medical Sciences (CIOMS), International Ethical Guidelines for Biomedical Research Involving Human Subjects , Geneva, 2002, at 38, available at <http://www.cioms.ch/publications/layout_guide2002.pdf> (last visited August 29, 2011).

See Renegar , “Returning Genetic Research Results to Individuals: Points to Consider,” Bioethics 20, no. 1 (2006): 24–36, at 31, available at <http://onlinelibrary.wiley.com/doi/10.1111/j.1467–8519.2006.00473.x/pdf> (last visited August 29, 2011); Medical Research Council and Wellcome Trust, Access to Collections of Data and Materials , London, 2006, at 11, available at <http://www.wellcome.ac.uk/stellent/groups/corporatesite/@msh_grants/documents/web_document/wtx030842.pdf> (last visited August 29, 2011); German National Ethics Council, Biobanks for Research , Berlin, 2004, at 59, available at <http://www.ethikrat.org/_english/publications/Opinion_Biobanks-for-research.pdf> (last visited August 29, 2011).

See Centre for Society and Genomics, supra note 3, at 18; Id. (German National Ethics Council), at 59; Interagency Advisory Panel on Research Ethics, Revised Draft 2nd Edition of the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS), Ottawa, 2009, at 162, available at <http://www.pre.ethics.gc.ca/pdf/eng/Revised%20Draft%202nd%20Ed%20PDFs/Revised%20Draft%202nd%20Edition%20TCPS_EN.pdf> (last visited August 29, 2011); Department of Health, Department of Western Australia, Guidelines for Human Biobanks, Genetic Research Databases and Associated Data (Australia Biobank), East Perth, 2010, at 33, available at <http://www.genomics.health.wa.gov.au/publications/docs/guidelines_for_human_biobanks.pdf> (last visited August 29, 2011).

See CARTaGENE, Information Brochure for Participants, at 10, available at <http://www.cartagene.qc.ca/images/stories/cartagene_brochure.pdf> (last visited August 29, 2011).

See Knoppers B. M. Kharaboyan L. , ‘“Deconstructing’ Biobank Communication of Results,” SCRIPTed 6, no. 3 (2009): 677–684, at 680, available at <http://www.law.ed.ac.uk/ahrc/script-ed/vol6–3/knoppers.pdf> (last visited August 29, 2011).

See UK Biobank, UK Biobank Ethics and Governance Framework, Manchester, 2007, at 8, available at <http://www.ukbiobank.ac.uk/docs/EGF20082.pdf> (last visited August 29, 2011).

See Wellcome Trust Case Control Consortium, available at <http://www.wtccc.org.uk/index.shtml> (last visited August 29, 2011); Corriell Institute, available at <http://ccr.coriell.org/Default.aspx> (last visited August 29, 2011).

See Genetic Alliance Biobank, Registry and Biorepository Bulletin, available at <http://www.geneticalliance.org/biobank.bulletin#section2> (last visited August 29, 2011).

See CARTaGENE, Samples and Data Access Policy , at 8, available at <http://www.cartagene.qc.ca/images/stories/pdf_en/6_sdapjanv2010_eng.pdf> (last visited August 29, 2011).

See Knoppers Kharaboyan , supra note 13, at 682.

See Knoppers B. M. Laberge C. , “Return of Accurate and Actionable Results: Yes,” American Journal of Bioethics 9, nos. 6–7 (2009): 36–43.

See National Heart, Lung and Blood Institute (NHLBI), NHLBI Working Group on Reporting Genetic Results in Research Studies, Meeting Summary , Bethesda MD , 2004, available at <http://www.nhlbi.nih.gov/meetings/workshops/gene-results.htm#guidelines> (last visited August 29, 2011).

See Australia Biobank, supra note 11, at 33.

See NHLBI, supra note 20, at recommendation 3.

See Australia Biobank, supra note 11, at 11.

World Health Organization (WHO), Genetic Database: Assessing the Benefits and Impact on Human and Patient Right, Geneva, 2003, at 13.

See NBAC, supra note 8, at 72.

See UK10K, supra note 4, at 8.

See Australia Biobank, supra note 11, at 11.

See TCPS, supra note 11, at 136.

Id., at 162.

See NHLBI, supra note 20.

German National Ethics Council, supra note 10, at 58.

See WHO, supra note 24, at 13.

Quebec Network of Applied Genetic Medicine, Statement of Principles on the Ethical Conduct of Human Genetic Research Involving Populations, Montreal, 2003, at 3.

See NBAC, supra note 8, at 72.

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, at Recommendation 2.5.

See UK10K, supra note 4, at 7.

Beskow L. M. , “Informed Consent for Population-Based Research Involving Genetics,” JAMA 286, no. 18 (2001): 2315–2321, at 2319, available at <http://jama.ama-assn.org/cgi/reprint/286/18/2315> (last visited August 29, 2011).

See UK10K, supra note 4, at 10 (emphasis added).

Organisation for Economic Co-Operation and Development, OECD Guidelines on Human Biobanks and Genetic Research Databases , Paris, 2009, at 34, available at <http://www.oecd.org/dataoecd/41/47/44054609.pdf> (last visited September 14, 2011).

Lévesque E. Joly Y. Simard J. , “Return of Research Results: General Principles and International Perspectives,” Journal of Law, Medicine & Ethics 39, no. 4 (2011): 583–592.