BMC Medical Ethics 9 (1):4 (2008)
Authors |
|
Abstract |
Research ethicists have recently declared a new ethical imperative: that researchers should communicate the results of research to participants. For some analysts, the obligation is restricted to the communication of the general findings or conclusions of the study. However, other analysts extend the obligation to the disclosure of individual research results, especially where these results are perceived to have clinical relevance. Several scholars have advanced cogent critiques of the putative obligation to disclose individual research results. They question whether ethical goals are served by disclosure or violated by non-disclosure, and whether the communication of research results respects ethically salient differences between research practices and clinical care. Empirical data on these questions are limited. Available evidence suggests, on the one hand, growing support for disclosure, and on the other, the potential for significant harm
|
Keywords | No keywords specified (fix it) |
Categories | (categorize this paper) |
DOI | 10.1186/1472-6939-9-4 |
Options |
![]() ![]() ![]() ![]() |
Download options
References found in this work BETA
Disclosing Individual Genetic Results to Research Participants.Vardit Ravitsky & Benjamin S. Wilfond - 2006 - American Journal of Bioethics 6 (6):8 – 17.
Informing Study Participants of Research Results: An Ethical Imperative.Conrad V. Fernandez, Eric Kodish & Charles Weijer - unknown
Duty to Disclose What? Querying the Putative Obligation to Return Research Results to Participants.F. A. Miller, R. Christensen, M. Giacomini & J. S. Robert - 2008 - Journal of Medical Ethics 34 (3):210-213.
Returning Genetic Research Results to Individuals: Points‐to‐Consider.Gaile Renegar, Christopher J. Webster, Steffen Stuerzebecher, Lea Harty, Susan E. Ide, Beth Balkite, Taryn A. Rogalski‐Salter, Nadine Cohen, Brian B. Spear & Diane M. Barnes - 2006 - Bioethics 20 (1):24-36.
Research Ethics and Misguided Moral Intuition.Franklin G. Miller - 2004 - Journal of Law, Medicine and Ethics 32 (1):111-116.
View all 12 references / Add more references
Citations of this work BETA
Disclosure of Individual Research Results in Clinico-Genomic Trials: Challenges, Classification and Criteria for Decision-Making.Regine Kollek & Imme Petersen - 2011 - Journal of Medical Ethics 37 (5):271-275.
How Do Young People with Cystic Fibrosis Conceptualize the Distinction Between Research and Treatment? A Qualitative Interview Study.Jennifer A. Dobson, Emily Christofides, Melinda Solomon, Valerie Waters & Kieran O’Doherty - 2015 - Ajob Empirical Bioethics 6 (4):1-11.
Accessing Health Services Through the Back Door: A Qualitative Interview Study Investigating Reasons Why People Participate in Health Research in Canada. [REVIEW]Anne Townsend & Susan M. Cox - 2013 - BMC Medical Ethics 14 (1):40.
What Does 'Respect for Persons' Require? Attitudes and Reported Practices of Genetics Researchers in Informing Research Participants About Research.F. A. Miller, R. Z. Hayeems, L. Li & J. P. Bytautas - 2012 - Journal of Medical Ethics 38 (1):48-52.
Ethical Issues Related to Computerised Family Medical Histories in Sickle Cell Disease: Inforare.S. Franrenet, N. Duchange, F. Galacteros, C. Quantin, O. Cohen, R. Nzouakou, S. Sudraud, C. Herve & G. Moutel - 2010 - Journal of Medical Ethics 36 (10):604-607.
View all 6 citations / Add more citations
Similar books and articles
Familial Communication of Research Results: A Need to Know?Lee Black & Kelly A. McClellan - 2011 - Journal of Law, Medicine and Ethics 39 (4):605-613.
Undesirable Implications of Disclosing Individual Genetic Results to Research Participants.Leslie Meltzer Henry - unknown
Disclosing Individual Genetic Results to Research Participants.Vardit Ravitsky & Benjamin S. Wilfond - 2006 - American Journal of Bioethics 6 (6):8 – 17.
Attitudes of Rhode Island Primary Care Physicians Toward the Use of Genetic Testing for Breast Cancer.Frances M. Alexakos - unknown
Disclosure of Research Result to Research Participants: Needs and Attitudes of Adolescents and Parents.Conrad Vincent Fernandez, Shaureen Taweel, Eric D. Kodish & Charles Weijer - unknown
Genomic Inheritances: Disclosing Individual Research Results From Whole-Exome Sequencing to Deceased Participants' Relatives.Ben Chan, Flavia M. Facio, Haley Eidem, Sara Chandros Hull, Leslie G. Biesecker & Benjamin E. Berkman - 2012 - American Journal of Bioethics 12 (10):1-8.
Do Patients with Breast Cancer Participating in Clinical Trials Receive Better Nursing Care?Myriam Skrutkowska & Charles Weijer - unknown
Inclusion of Racial and Ethnic Minorities in Genetic Research: Advance the Spirit by Changing the Rules?Sarah Knerr, Dawn Wayman & Vence L. Bonham - 2011 - Journal of Law, Medicine and Ethics 39 (3):502-512.
Ethics of Medical Care and Clinical Research: A Qualitative Study of Principal Investigators in Biomedical HIV Prevention Research.Bridget G. Haire - 2013 - Journal of Medical Ethics 39 (4):231-235.
The Return of Results of Deceased Research Participants.Anne Marie Tassé - 2011 - Journal of Law, Medicine and Ethics 39 (4):621-630.
The Return of Research Results to Participants: Pilot Questionnaire of Adolescents and Parents of Children with Cancer.Conrad V. Fernandez, Darcy Santor, Charles Weijer, Caron Strahlendorf, Albert Moghrabi, Rebecca Pentz, Jun Gao & Eric Kodish - unknown
Review of The Oxford Textbook of Clinical Research Ethics, by D. Wendler, C. Grady, R. Crouch, R. Lie, F. Miller, and E. Emanuel.Roger Stanev - 2012 - Theoretical Medicine and Bioethics 33 (3):221-226.
Vulnerability in Palliative Care Research: Findings From a Qualitative Study of Black Caribbean and White British Patients with Advanced Cancer.J. Koffman, M. Morgan, P. Edmonds, P. Speck & I. J. Higginson - 2009 - Journal of Medical Ethics 35 (7):440-444.
Analytics
Added to PP index
2010-08-24
Total views
8 ( #946,925 of 2,412,036 )
Recent downloads (6 months)
1 ( #538,761 of 2,412,036 )
2010-08-24
Total views
8 ( #946,925 of 2,412,036 )
Recent downloads (6 months)
1 ( #538,761 of 2,412,036 )
How can I increase my downloads?
Downloads