Journal of Medical Ethics 30 (2):185-189 (2004)
AbstractRecent research governance documents say that the body of research evidence must reflect population diversity. The response to this needs to be more sophisticated than simply ensuring minorities are present in samples. For quantitative research looking primarily at treatment effects of drugs and devices four suggestions are made. First, identify where the representation of minorities in samples matters—for example, where ethnicity may cause different treatment effects. Second, where the representation of a particular group matters then subgroup analysis of the results will usually be necessary. Third, ensuring representation and subgroup analysis will have costs; deciding on whether such representation is worthwhile will involve cost benefit analysis. Fourth, the representation of minorities should not be seen as mainly a locality issue. For qualitative research it is argued that the representation of diversity is often important. Given the small samples of many qualitative projects, however, the best way to ensure representation occurs is to allow a proliferation of such research, not to stipulate such representation in samples.
Similar books and articles
Informed consent and Anonymous tissue Samples: The case of hiv seroprevalence studies.Loretta M. Kopelman - 1994 - Journal of Medicine and Philosophy 19 (6):525-552.
The adequacy of informed consent forms in genetic research in Oman: A pilot study.Asya Al-Riyami, Deepali Jaju, Sanjay Jaju & Henry J. Silverman - 2011 - Developing World Bioethics 11 (2):57-62.
Qualitative study of knowledge and attitudes to biobanking among lay persons in Nigeria.Michael A. Igbe & Clement A. Adebamowo - 2012 - BMC Medical Ethics 13 (1):27-.
Donor perspectives on issues associated with donation of genetic Samples and information: An australian viewpoint. [REVIEW]Margaret Otlowski - 2007 - Journal of Bioethical Inquiry 4 (2):135-150.
Conducting industrial and organizational psychological research: Institutional review of research in work organizations.Daniel R. Ilgen & Bradford S. Bell - 2001 - Ethics and Behavior 11 (4):395 – 412.
Attitudes of the Japanese public and doctors towards use of archived information and samples without informed consent: Preliminary findings based on focus group interviews. [REVIEW]Fukuhara Shunichi, Sekimoto Miho, Nishigaki Etsuyo, Ohnishi Motoki, Asai Atsushi & Fukui Tsuguya - 2002 - BMC Medical Ethics 3 (1):1-10.
The Immortal Life of Henrietta Lacks, Feminist Themes, and Research Ethics.Lisa S. Parker - 2012 - International Journal of Feminist Approaches to Bioethics 5 (1):159-165.
Attitudes towards transfers of human tissue samples across borders: An international survey of researchers and policy makers in five countries.Xinqing Zhang, Kenji Matsui, Benjamin Krohmal, Alaa Abou Zeid, Vasantha Muthuswamy, Young Mo Koo, Yoshikuni Kita & Reidar K. Lie - 2010 - BMC Medical Ethics 11 (1):16-.
That’s Not Fair! How Personal Value for Diversity Influences Reactions to the Perceived Discriminatory Treatment of Minorities.María del Carmen Triana, María Fernanda Wagstaff & Kwanghyun Kim - 2012 - Journal of Business Ethics 111 (2):211-218.
Realizing benefit sharing – the case of post-study obligations.Doris Schroeder & Eugenijus Gefenas - 2012 - Bioethics 26 (6):305-314.
A model of community substituted consent for research on the vulnerable.David C. Thomasma - 2000 - Medicine, Health Care and Philosophy 3 (1):47-57.
Genetic research, adolescents, and informed consent.Robert F. Weir & Jay R. Horton - 1995 - Theoretical Medicine and Bioethics 16 (4).
Funding Priorities: Autism and the Need for a More Balanced Research Agenda in Canada.T. M. Krahn & A. Fenton - 2012 - Public Health Ethics 5 (3):296-310.
Added to PP
Historical graph of downloads
Citations of this work
Meeting the needs of underserved populations: setting the agenda for more inclusive citizen science of medicine.Amelia Fiske, Barbara Prainsack & Alena Buyx - 2019 - Journal of Medical Ethics 45 (9):617-622.
What people close to death say about euthanasia and assisted suicide: a qualitative study.A. Chapple, S. Ziebland, A. McPherson & A. Herxheimer - 2006 - Journal of Medical Ethics 32 (12):706-710.
Minority Veterans Are More Willing to Participate in Complex Studies Compared to Non-minorities.Leonardo Tamariz, Irene Kirolos, Fiorella Pendola, Erin N. Marcus, Olveen Carrasquillo, Jimmy Rivadeneira & Ana Palacio - 2018 - Journal of Bioethical Inquiry 15 (1):155-161.
Willingness to participate in health research: Tunisian survey.Wahid Bouida, Mohamed Habib Grissa, Asma Zorgati, Kaouthar Beltaief, Hamdi Boubaker, Asma Sriha, Riadh Boukef & Semir Nouira - 2016 - BMC Medical Ethics 17 (1):47.
Ethical Issues in Health Research on Ethnic Minority Populations: Focusing on Inclusion and Exclusion.Raj Bhopal - 2008 - Research Ethics 4 (1):15-19.
References found in this work
Declaration of Helsinki. Ethical Principles for Medical Research Involving Human Subjects.World Medical Association - 2009 - Jahrbuch für Wissenschaft Und Ethik 14 (1):233-238.
Implications of Socio-Cultural Contexts for the Ethics of Clinical Trials.Richard E. Ashcroft, D. Chadwick, S. Clark, Richard H. T. Edwards & Lucy Frith - 1997 - Core Research.
New governance arrangements for research ethics committees: is facilitating research achieved at the cost of participants' interest.E. Cave - 2002 - Journal of Medical Ethics 28 (5):318-321.
Minority populations and advance directives: insights from a focus group methodology.Joshua M. Hauser, Sharon F. Kleefield, Troyen A. Brennan & Ruth L. Fischbach - 1997 - Cambridge Quarterly of Healthcare Ethics 6 (1):58-71.
Minority Populations and Advance Directives: Insights from a Focus Group Methodology.Joshua M. Hauser, Sharon F. Kleefield, Troyen A. Brennan & Ruth L. Fischbach - 1997 - Cambridge Quarterly of Healthcare Ethics 6 (1):58-71.