Inclusion of Racial and Ethnic Minorities in Genetic Research: Advance the Spirit by Changing the Rules?
David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Jack Alan Reynolds
Learn more about PhilPapers
Journal of Law, Medicine & Ethics 39 (3):502-512 (2011)
Genetic research aimed at understanding human health and disease is grounded in the study of genetic variation. The inclusion of research subjects with diverse ancestral backgrounds is essential for genetic and genomic research that fully explores human diversity. Large-scale cohort studies and biobanks in Europe and the United States often do not include the breadth of ethnic and racial diversity observed in their countries' citizens. This article explores the findings of a qualitative study of U.S. scientists' understanding and views of the NIH Policy and Guidelines on the Inclusion of Minorities as Subjects in Clinical Research. The findings suggest that the policy restricts how scientists use racial and ethnic categories to define and report their study populations and does little to motivate their efforts to increase the inclusion of non-European ancestral populations in genetic and genomic research
|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
No references found.
Citations of this work BETA
No citations found.
Similar books and articles
Jennifer Alvidrez & Patricia A. Areán (2002). Psychosocial Treatment Research with Ethnic Minority Populations: Ethical Considerations in Conducting Clinical Trials. Ethics and Behavior 12 (1):103 – 116.
Asya Al-Riyami, Deepali Jaju, Sanjay Jaju & Henry J. Silverman (2011). The Adequacy of Informed Consent Forms in Genetic Research in Oman: A Pilot Study. Developing World Bioethics 11 (2):57-62.
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.
María del Carmen Triana, María Fernanda Wagstaff & Kwanghyun Kim (2012). That's Not Fair! How Personal Value for Diversity Influences Reactions to the Perceived Discriminatory Treatment of Minorities. Journal of Business Ethics 111 (2):211-218.
Karen J. Maschke (2010). Wanted: Human Biospecimens. Hastings Center Report 40 (5):21-23.
Celia B. Fisher & Scyatta A. Wallace (2000). Through the Community Looking Glass: Reevaluating the Ethical and Policy Implications of Research on Adolescent Risk and Psychopathology. Ethics and Behavior 10 (2):99 – 118.
Ainsley Newson (2004). The Nature and Significance of Behavioural Genetic Information. Theoretical Medicine and Bioethics 25 (2):89-111.
Charles Weijer & P. B. Miller, Protecting Communities in Pharmacogenetic and Pharmacogenomic Research.
Lee Black & Kelly A. McClellan (2011). Familial Communication of Research Results: A Need to Know? Journal of Law, Medicine & Ethics 39 (4):605-613.
Janet Malek (2007). Understanding Risks and Benefits in Research on Reproductive Genetic Technologies. Journal of Medicine and Philosophy 32 (4):339 – 358.
Jessica Berg & Nicole Deming (2011). New Rules for Research with Human Participants? Hastings Center Report 41 (6):10-11.
Ambroise Wonkam, Marcel Azabji Kenfack, Walinjom Ft Muna & Odile Ouwe‐Missi‐Oukem‐Boyer (2011). Ethics of Human Genetic Studies in Sub-Saharan Africa: The Case of Cameroon Through a Bibliometric Analysis. Developing World Bioethics 11 (3):120-127.
Russell Powell (2010). The Evolutionary Biological Implications of Human Genetic Engineering. Journal of Medicine and Philosophy 37 (1):22.
Added to index2011-08-23
Total downloads5 ( #377,318 of 1,726,249 )
Recent downloads (6 months)1 ( #369,877 of 1,726,249 )
How can I increase my downloads?