Abstract
Recent articles have argued from principles of bioethics for the right of research subjects to receive the results of the studies in which they have participated. We argue that accountability is a powerful tool of meso-level analysis appropriate to reasoning about answerability in research ethics, and that it captures the responsibility of researchers to disseminate study results to research subjects. We offer the following features of the research situation as relevant to the manner of dissemination to study subjects, in addition to factors already proposed in the literature (risk and impact on health outcome): (a) features of the research subject in relation to identity, personal investment, disease, and community; (b) characteristics of the research study and field of inquiry in relation to certainty and significance; and (c) relationships among the research subjects and the healthcare workers involved in their care and in the research.
| Original language | English |
|---|---|
| Pages (from-to) | 1-16 |
| Number of pages | 16 |
| Journal | Accountability in Research |
| Volume | 12 |
| Issue number | 1 |
| DOIs | |
| Publication status | Published - 2005 |
| Externally published | Yes |
Bibliographical note
Funding Information:Medical Research Council of Canada, National Science and Engineering Research Council of Canada, Social Science and Humanities Research Council of Canada. (1998, with 2000, 2002 updates) Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (Ottawa: Author).
Funding Information:
Abby, M., Massey, M.D., Galandiuk, S., and Polk, H.C. (1994). Peer Review is an Effective Screening Process to Evaluate Medical Manuscripts. Journal of the American Medical Association, 272: 105–107. Angell, M., and Kassirer, J. (1991). The Ingelfinger Rule Revisited. New England Journal of Medicine, 325: 1371–1373. Altman, L. (1996a). The Ingelfinger Rule: Embargos and Journal Peer Review, Part 1. Lancet North American Edition, 347: 1382–1386. Altman, L. (1996b). The Ingelfinger Rule: Embargos and Journal Peer Review, Part 2. Lancet North American Edition, 347: 1459–1463. Brinkerhoff, D. W. (2004). Accountability and Health Systems: Toward Concep-tual Clarity and Policy Relevance. Health Policy and Planning, 19(6): 371–379. Bunin, G. R., Kazak, A. E., and Mitelman O. (1996). Informing Subjects of Epidemiologic Study Results. Pediatrics, 97(4): 486–491. Callaham, M. L., Wears, R. L., Weber, E. J., Barton, C., and Young, G. (1998). Positive-Outcome Bias and Other Limitations in the Outcome of Research Abstracts Submitted to a Scientific Meeting. Journal of the American Medical Association, 280: 254–257. Cancer Leadership Council, Cancer Research Foundation of America, Coalition of National Cancer Cooperative Groups, Oncology Nursing Society.(1999) Increas-ing Patient Participation: Third in the Summit Series on Clinical Trials. Available at <http://www.cancersummit.org/pdfs/summit_iii_report.pdf>. Code of Federal Regulations, Title 45, Part 46: Protection of Human Subjects 116(b)(5). Davidoff, F., DeAngelis, C. D., Drazen, J. M., Nicholls, M. G., Hoey, J., Hojgaard, L., Horton, R., Kotzin, S., Nylenna, M., Overbeke, A., Sox, H. C., Weyden, M., and Wilkes, M. S. (2004). Improving Peer Review: Who’s Responsible? British Medical Journal, 328: 657–658. Sponsorship, Authorship and Accountability. Canadian Medical Association Journal 165(6): 786–788. Day, P., and Klein, R. (1987). Accountabilities: Five Public Services (London: Tavistock Publications). Dickersin, K., and Min, Y. (1993). NIH Clinical Trials and Publication Bias. Online Journal of Current Clinical Trials, April 28. Elliott, R., and Jürgens, R. (2000). HIV Screening at the Point of Care: Legal and Ethical Questions (Montreal: Canadian HIV/AIDS Legal Network). Emanuel, E. J., and Emanuel, L. L. (1996). What Is Accountability in Health Care? Annals of Internal Medicine, 124(2): 229–239.
ASJC Scopus Subject Areas
- Education
- Library and Information Sciences