Vicki Marsh, Francis Kombe, Raymond Fitzpatrick, Thomas N. Williams, Michael Parker & Sassy Molyneux
BMC Medical Ethics 14 (1):41 (2013)
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
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Keywords | Kenya Africa Sickle cell disease Community consultation Genetic findings Genetic and genomics research Deliberative methods Empirical ethics |
Categories | (categorize this paper) |
DOI | 10.1186/1472-6939-14-41 |
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References found in this work BETA
Empirical Ethics as Dialogical Practice.Guy Widdershoven, Tineke Abma & Bert Molewijk - 2009 - Bioethics 23 (4):236-248.
Toward Methodological Innovation in Empirical Ethics Research.Michael Dunn, Mark Sheehan, Tony Hope & Michael Parker - 2012 - Cambridge Quarterly of Healthcare Ethics 21 (4):466-480.
Disclosing Individual Genetic Results to Research Participants.Vardit Ravitsky & Benjamin S. Wilfond - 2006 - American Journal of Bioethics 6 (6):8 – 17.
Appropriate Methodologies for Empirical Bioethics: It's All Relative.Jonathan Ives & Heather Draper - 2009 - Bioethics 23 (4):249-258.
Engaging Communities to Strengthen Research Ethics in Low‐Income Settings: Selection and Perceptions of Members of a Network of Representatives in Coastal K Enya.Dorcas M. Kamuya, Vicki Marsh, Francis K. Kombe, P. Wenzel Geissler & Sassy C. Molyneux - 2013 - Developing World Bioethics 13 (1):10-20.
View all 15 references / Add more references
Citations of this work BETA
Solidarity and Community Engagement in Global Health Research.Bridget Pratt, Phaik Yeong Cheah & Vicki Marsh - 2020 - American Journal of Bioethics 20 (5):43-56.
Obtaining Informed Consent for Genomics Research in Africa: Analysis of H3Africa Consent Documents.Nchangwi Syntia Munung, Patricia Marshall, Megan Campbell, Katherine Littler, Francis Masiye, Odile Ouwe-Missi-Oukem-Boyer, Janet Seeley, D. J. Stein, Paulina Tindana & Jantina de Vries - 2016 - Journal of Medical Ethics 42 (2):132-137.
Community Engagement Strategies for Genomic Studies in Africa: A Review of the Literature. [REVIEW]Paulina Tindana, Jantina de Vries, Megan Campbell, Katherine Littler, Janet Seeley, Patricia Marshall, Jennifer Troyer, Morisola Ogundipe, Vincent Pius Alibu, Aminu Yakubu & Michael Parker - 2015 - BMC Medical Ethics 16 (1):24.
Do Solidarity and Reciprocity Obligations Compel African Researchers to Feedback Individual Genetic Results in Genomics Research?Dimpho Ralefala, Mary Kasule, Ambroise Wonkam, Mogomotsi Matshaba & Jantina de Vries - 2020 - BMC Medical Ethics 21 (1):1-11.
Informed Consent in Genomic Research and Biobanking: Taking Feedback of Findings Seriously.Paulina Tindana, Cornelius Depuur, Jantina de Vries, Janet Seeley & Michael Parker - 2020 - Global Bioethics 31 (1):200-215.
View all 9 citations / Add more citations
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