The adequacy of informed consent forms in genetic research in Oman: A pilot study

Developing World Bioethics 11 (2):57-62 (2011)
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
 Save to my reading list
Follow the author(s)
Edit this record
My bibliography
Export citation
Find it on Scholar
Mark as duplicate
Request removal from index
Revision history
Download options
Our Archive

Upload a copy of this paper     Check publisher's policy     Papers currently archived: 30,300
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 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 downloads
19 ( #265,460 of 2,193,213 )

Recent downloads (6 months)
1 ( #290,278 of 2,193,213 )

How can I increase my downloads?

Monthly downloads
My notes
Sign in to use this feature