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.
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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.
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.
What Constitutes Good Ethical Practice in Genomic Research in Africa? Perspectives of Participants in a Genomic Research Study in Uganda.Rwamahe Rutakumwa, Jantina de Vries, Michael Parker, Paulina Tindana, Oliver Mweemba & Janet Seeley - forthcoming - Tandf: Global Bioethics:1-15.
View all 9 citations / Add more citations
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