Journal of Law, Medicine and Ethics 39 (4):631-639 (2011)
|Abstract||Returning individual results to participants in research studies is gaining acceptance and policy guidance is now available for investigators to develop a plan for returning results at the local level. However, returning results discovered through the work of an international scientific research consortium presents additional ethical and procedural difficulties. No general guidance is available for international consortia that wish to consider this issue, but there are examples of internal policies that are being used by consortia such as the International Cancer Genome Consortium (ICGC) and the Type 1 Diabetes Genetics Consortium (T1DGC). This paper presents the policy stance these studies have adopted regarding returning individual research results and their reasons behind it, and gives specific examples from their policy documents and project consent materials. Finally, it suggests an oversight mechanism these and other international consortia can use to ensure that this important issue is addressed appropriately|
|Keywords||No keywords specified (fix it)|
|Through your library||Configure|
Similar books and articles
Emmanuelle Lévesque, Yann Joly & Jacques Simard (2011). Return of Research Results: General Principles and International Perspectives. Journal of Law, Medicine and Ethics 39 (4):583-592.
Anne Marie Tassé (2011). The Return of Results of Deceased Research Participants. Journal of Law, Medicine and Ethics 39 (4):621-630.
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.
Conrad Vincent Fernandez, Shaureen Taweel, Eric D. Kodish & Charles Weijer, Disclosure of Research Result to Research Participants: Needs and Attitudes of Adolescents and Parents.
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.
Conrad V. Fernandez, Darcy Santor, Charles Weijer, Caron Strahlendorf, Albert Moghrabi, Rebecca Pentz, Jun Gao & Eric Kodish, The Return of Research Results to Participants: Pilot Questionnaire of Adolescents and Parents of Children with Cancer.
Edward S. Dove, Denise Avard, Lee Black & Bartha M. Knoppers (2013). Emerging Issues in Paediatric Health Research Consent Forms in Canada: Working Towards Best Practices. BMC Medical Ethics 14 (1):1-10.
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.
Pilar N. Ossorio (2006). Letting the Gene Out of the Bottle: A Comment on Returning Individual Research Results to Participants. American Journal of Bioethics 6 (6):24 – 25.
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.
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.
Conrad V. Fernandez, Eric Kodish, Susan Shurin & Charles Weijer, Offering to Return Results to Research Participants: Attitudes and Needs of Principal Investigators in the Children's Oncology Group.
Added to index2011-11-16
Total downloads2 ( #232,316 of 549,007 )
Recent downloads (6 months)0
How can I increase my downloads?