Is it ethical to deny genetic research participants individualised results?

Journal of Medical Ethics

Volumn 35, Issue 4, 2009, Pages 209-213

  Affleck, P ^a  

^a ST JAMES S UNIVERSITY HOSPITAL   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; DUTY TO RECONTACT; ETHICS; GENETICS; HUMAN; HUMAN EXPERIMENT; INTERPERSONAL COMMUNICATION; PRACTICE GUIDELINE; RESEARCH SUBJECT;

DUTY TO RECONTACT; GENETIC RESEARCH; GUIDELINES AS TOPIC; HUMAN EXPERIMENTATION; HUMANS; RESEARCH SUBJECTS; TRUTH DISCLOSURE;

EID: 69749091289     PISSN: 03066800     EISSN: 14734257     Source Type: Journal    
DOI: 10.1136/jme.2007.024034     Document Type: Article

References (14)

1. GenoMEL. Physician information: familial melanoma. http://www.genomel.org/english/physicianInformation.htm (accessed 22 Jan 2009).
2. Beauchamp T, Childress J. Principles of biomedical ethics. 5th edn. Oxford: Oxford University Press, 2001:57.
3. Department of Health. Research governance framework for health and social care. 2nd edn. London: DH, 2005:17. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4108962 (accessed 27 Jan 2009).
4. Council for International Organizations of Medical Sciences (CIOMS). International ethical guidelines for biomedical research involving human subjects. Geneva: CIOMS, 2002. http://www.cioms.ch/frame_guidelines_nov_2002.htm (accessed 22 Jan 2009).
5. Austin M. Ethical issues in human genome epidemiology: a case study based on the Japanese American Family Study in Seattle, Washington. Am J Epidemiol 2002;155:585-92.
6. Beskow L, Burke W, Merz J, et al. Informed consent for population-based research involving genetics. JAMA 2001;18:2315-21.
7. Glass K, Weijer C, Palmour R, et al. Structuring the review of human genetics protocols: gene localization and identification studies. IRB 1996;4:1-9.
8. Ashburn T, Wilson S, Eisenstein B. Human tissue research in the genomic era of medicine: balancing individual and societal interests. Arch Intern Med 2000;22:3377-84.
9. Laurie G. Genetic privacy: a challenge to medico-legal norms. Cambridge: Cambridge University Press, 2002:260.
10. Department of Health and Association of British Insurers. Concordat and moratorium on genetics and insurance. London: DH, 2005:3. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4105905 (accessed 22 Jan 2009).
11. Fernandez C, Kodish E, Weijer C. Informing study participants of research results: an ethical imperative. IRB 2003;3:12-19.
12. Richards M, Ponder M, Pharoah P, et al. Issues of consent and feedback in a genetic epidemiological study of women with breast cancer. J Med Ethics 2003;29:93-6.
13. Cassileth B, Zupkis R, Sutton-Smith K, et al. Informed consent: why are its goals imperfectly realized? N Engl J Med 1980;16:896-900.
14. Ravitsky V, Wilfond B. Disclosing individual genetic results to research participants. Am J Bioeth 2006;6(6):8-17.