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

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


Upload a copy of this paper     Check publisher's policy on self-archival     Papers currently archived: 9,360
External links
  •   Try with proxy.
  • Through your library Configure
    References found in this work BETA

    No references found.

    Citations of this work BETA
    Similar books and articles
    O. O'Neill (2001). Informed Consent and Genetic Information. Studies in History and Philosophy of Science Part C 32 (4):689-704.
    Carl E. Schneider (2010). The Hydra. Hastings Center Report 40 (4):9-11.
    Karen J. Maschke (2010). Wanted: Human Biospecimens. Hastings Center Report 40 (5):21-23.
    Analytics

    Monthly downloads

    Added to index

    2010-12-27

    Total downloads

    4 ( #198,624 of 1,089,047 )

    Recent downloads (6 months)

    0

    How can I increase my downloads?

    My notes
    Sign in to use this feature


    Discussion
    Start a new thread
    Order:
    There  are no threads in this forum
    Nothing in this forum yet.