Title |
Consulting communities on feedback of genetic findings in international health research: sharing sickle cell disease and carrier information in coastal Kenya
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Published in |
BMC Medical Ethics, October 2013
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DOI | 10.1186/1472-6939-14-41 |
Pubmed ID | |
Authors |
Vicki Marsh, Francis Kombe, Raymond Fitzpatrick, Thomas N Williams, Michael Parker, Sassy Molyneux |
Abstract |
International health research in malaria-endemic settings may include screening for sickle cell disease, given the relationship between this important genetic condition and resistance to malaria, generating questions about whether and how findings should be disclosed. The literature on disclosing genetic findings in the context of research highlights the role of community consultation in understanding and balancing ethically important issues from participants' perspectives, including social forms of benefit and harm, and the influence of access to care. To inform research practice locally, and contribute to policy more widely, this study aimed to explore the views of local residents in Kilifi County in coastal Kenya on how researchers should manage study-generated information on sickle cell disease and carrier status. |
X Demographics
Geographical breakdown
Country | Count | As % |
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United States | 1 | 33% |
South Africa | 1 | 33% |
United Kingdom | 1 | 33% |
Demographic breakdown
Type | Count | As % |
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Members of the public | 2 | 67% |
Scientists | 1 | 33% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
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United Kingdom | 1 | <1% |
Sierra Leone | 1 | <1% |
Unknown | 121 | 98% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Student > Ph. D. Student | 21 | 17% |
Student > Master | 21 | 17% |
Researcher | 16 | 13% |
Librarian | 4 | 3% |
Other | 4 | 3% |
Other | 25 | 20% |
Unknown | 32 | 26% |
Readers by discipline | Count | As % |
---|---|---|
Social Sciences | 24 | 20% |
Medicine and Dentistry | 16 | 13% |
Nursing and Health Professions | 13 | 11% |
Agricultural and Biological Sciences | 6 | 5% |
Immunology and Microbiology | 5 | 4% |
Other | 18 | 15% |
Unknown | 41 | 33% |