Developing World Bioethics 11 (2):57-62 (2011)

Henry Silverman
University of Maryland at Baltimore
Genetic research presents ethical challenges to the achievement of valid informed consent, especially in developing countries with areas of low literacy. During the last several years, a number of genetic research proposals involving Omani nationals were submitted to the Department of Research and Studies, Ministry of Health, Oman.The objective of this paper is to report on the results of an internal quality assurance initiative to determine the extent of the information being provided in genetic research informed consent forms. In order to achieve this, we developed checklists to assess the inclusion of basic elements of informed consent as well as elements related to the collection and future storage of biological samples. Three of the authors independently evaluated and reached consensus on seven informed consent forms that were available for review.Of the seven consent forms, four had less than half of the basic elements of informed consent. None contained any information regarding whether genetic information relevant to health would be disclosed, whether participants may share in commercial products, the extent of confidentiality protections, and the inclusion of additional consent forms for future storage and use of tissue samples. Information regarding genetic risks and withdrawal of samples were rarely mentioned (1/7), whereas limits on future use of samples were mentioned in 3 of 7 consent forms.Ultimately, consent forms are not likely to address key issues regarding genetic research that have been recommended by research ethics guidelines. We recommend enhanced educational efforts to increase awareness, on the part of researchers, of information that should be included in consent forms
Keywords research ethics  Oman  genetic research  informed consent
Categories (categorize this paper)
DOI 10.1111/j.1471-8847.2010.00293.x
Edit this record
Mark as duplicate
Export citation
Find it on Scholar
Request removal from index
Revision history

Download options

PhilArchive copy

Upload a copy of this paper     Check publisher's policy     Papers currently archived: 64,209
Through your library

References found in this work BETA

No references found.

Add more references

Citations of this work BETA

Add more citations

Similar books and articles

Informed Consent and Genetic Information.O. O'Neill - 2001 - Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 32 (4):689-704.
The Hydra.Carl E. Schneider - 2010 - Hastings Center Report 40 (4):9-11.
Genetic Research, Adolescents, and Informed Consent.Robert F. Weir & Jay R. Horton - 1995 - Theoretical Medicine and Bioethics 16 (4).
Autonomy, Consent and the Law.Sheila McLean - 2010 - Routledge-Cavendish.
Can Broad Consent Be Informed Consent?M. Sheehan - 2011 - Public Health Ethics 4 (3):226-235.
Wanted: Human Biospecimens.Karen J. Maschke - 2010 - Hastings Center Report 40 (5):21-23.


Added to PP index

Total views
40 ( #270,877 of 2,455,142 )

Recent downloads (6 months)
1 ( #449,153 of 2,455,142 )

How can I increase my downloads?


My notes