David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Jack Alan Reynolds
Learn more about PhilPapers
Journal of Law, Medicine and Ethics 39 (4):621-630 (2011)
The death of a research participant raises numerous ethical and legal issues regarding the return of research results to related family members. This question is particularly acute in the context of genetic research since the research results from an individual may be relevant to each of the biological relatives. This paper first investigates the ethical and legal frameworks governing the return of a deceased participant's individual research results to his or her related family members. Then, it weighs the rights and interests of both the deceased individual and related family members in an attempt to identify key ethical considerations underlying the return of such results. This analysis of international guidelines and national laws and regulations reveals that though the legal framework regarding privacy and confidentiality of clinical and research information is well established (albeit not homogenous), guidelines are generally absent in the post-mortem context. Nevertheless, a brief analysis of this issue through two ethical perspectives (principlism and consequentialism) allows us to identify six key elements to be taken into consideration when returning a deceased participant's research results
|Keywords||No keywords specified (fix it)|
|Categories||categorize this paper)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library|
References found in this work BETA
Joan C. Callahan (1987). On Harming the Dead. Ethics 97 (2):341-352.
Citations of this work BETA
Gregory Costain & Anne S. Bassett (2012). The Ever-Evolving Concept of Clinical Significance and the Potential for Sins of Omission in Genetic Research. American Journal of Bioethics 12 (10):22-24.
Lauren C. Milner, Emily Y. Liu & Nanibaa’ A. Garrison (2013). Relationships Matter: Ethical Considerations for Returning Results to Family Members of Deceased Subjects. American Journal of Bioethics 13 (10):66 - 67.
Similar books and articles
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.
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.
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.
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 Vincent Fernandez, Shaureen Taweel, Eric D. Kodish & Charles Weijer, Disclosure of Research Result to Research Participants: Needs and Attitudes of Adolescents and Parents.
Bartha Maria Knoppers & Amy Dam (2011). Return of Results: Towards a Lexicon? Journal of Law, Medicine and Ethics 39 (4):577-582.
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.
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.
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.
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.
Conrad V. Fernandez, Eric Kodish, Shaureen Taweel, Susan Shurin & Charles Weijer, Disclosure of the Right of Research Participants to Receive Research Results: An Analysis of Consent Forms in the Children's Oncology Group.
Vardit Ravitsky & Benjamin S. Wilfond (2006). Disclosing Individual Genetic Results to Research Participants. American Journal of Bioethics 6 (6):8 – 17.
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. [REVIEW] BMC Medical Ethics 14 (1):1-10.
Added to index2011-11-16
Total downloads5 ( #237,748 of 1,102,039 )
Recent downloads (6 months)1 ( #306,606 of 1,102,039 )
How can I increase my downloads?