Return of Research Results: General Principles and International Perspectives
Journal of Law, Medicine and Ethics 39 (4):583-592 (2011)
| Abstract | Five years ago, an article co-written by two of us (Joly and Simard) presented an emerging trend to disclose certain individual genetic results to research participants. Since then, both technologies and research practices have evolved significantly. Given this rapid evolution, our goal is to provide updated and thorough guidance on this issue. Our paper begins by identifying the ethical principles that support the return of results: justice, beneficence, and respect for persons. Then, it presents the results of an analysis of international norms on the return of results, covering both general and individual research results. It reveals existing divergence and consensus on these topics within the international community. With the goal of promoting greater harmonization, we conclude by proposing a flexible framework for the return of individual research results | |||||||||
| Keywords | No keywords specified (fix it) | |||||||||
| Categories | ||||||||||
| Options |
|
|||||||||
| PhilPapers Archive |
Upload a copy of this paper Check publisher's policy on self-archival Papers currently archived: 5,653 |
| External links |
|
| Through your library | Configure |
Anne Marie Tassé (2011). The Return of Results of Deceased Research Participants. Journal of Law, Medicine and Ethics 39 (4):621-630.
Susan E. Wallace (2011). The Needle in the Haystack: International Consortia and the Return of Individual Research Results. Journal of Law, Medicine and Ethics 39 (4):631-639.
Denise Avard, Karine Sénécal, Parvaz Madadi & Daniel Sinnett (2011). Pediatric Research and the Return of Individual Research Results. Journal of Law, Medicine and Ethics 39 (4):593-604.
Bartha Maria Knoppers & Amy Dam (2011). Return of Results: Towards a Lexicon? Journal of Law, Medicine and Ethics 39 (4):577-582.
Ma'N. H. Zawati & Amélie Rioux (2011). Biobanks and the Return of Research Results: Out with the Old and In with the New? Journal of Law, Medicine and Ethics 39 (4):614-620.
Bartha Maria Knoppers & Emmanuelle Lévesque (2011). INTRODUCTION: Return of Research Results: How Should Research Results Be Handled? Journal of Law, Medicine and Ethics 39 (4):574-576.
Lee Black & Kelly A. McClellan (2011). Familial Communication of Research Results: A Need to Know? Journal of Law, Medicine and Ethics 39 (4):605-613.
Juli Murphy, Joan Scott, David Kaufman, Gail Geller, Lisa LeRoy & Kathy Hudson (2008). Public Expectations for Return of Results From Large-Cohort Genetic Research. American Journal of Bioethics 8 (11):36 – 43.
Vardit Ravitsky & Benjamin S. Wilfond (2006). Disclosing Individual Genetic Results to Research Participants. American Journal of Bioethics 6 (6):8 – 17.
Ben Chan, Flavia M. Facio, Haley Eidem, Sara Chandros Hull, Leslie G. Biesecker & Benjamin E. Berkman (2012). Genomic Inheritances: Disclosing Individual Research Results From Whole-Exome Sequencing to Deceased Participants' Relatives. American Journal of Bioethics 12 (10):1-8.
Jean-Marc Dewaele (2010). Emotions in Multiple Languages. Palgrave Macmillan.
Monthly downloads |
Added to index2011-11-16Total downloads3 ( #201,730 of 548,984 )Recent downloads (6 months)1 ( #63,327 of 548,984 )How can I increase my downloads? |

