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Title: Sharing findings on sickle cell disorder in international collaborative biomedical research : an empirical ethics study in coastal Kenya
Author: Marsh, Victoria Mary Chuck
ISNI:       0000 0004 2728 1498
Awarding Body: University of Oxford
Current Institution: University of Oxford
Date of Award: 2012
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Against the background of a dilemma experienced by researchers during a genomics study at an established biomedical research centre in Kenya, the broad aims of this thesis are to develop appropriate responses to important ethical questions on sharing information on a common and serious genetic condition, sickle cell disorder, and assess the responsibilities of researchers in this regard. Using an empirical approach to normative reflection across two phases of qualitative research, I explore the nature of important moral concerns related to sharing sickle cell disease information from researchers’ and community members’ points of view; and develop a bottom-up normative analysis around the questions generated. This analysis interweaves community experiences, processes of community reasoning and ex situ normative reflection; placing community views and values centrally while referencing these to wider ethical debates, commentaries and guidelines in the literature. Two main outputs of this thesis are to provide recommendations for information sharing on SCD findings in the genomics study in Kilifi; and to propose a set of key issues to consider for this type of information in other studies and geographic settings. I conclude that researchers have a strong responsibility to share SCD information on affected children with families as a form of ancillary service (validating tests, counselling and care); but less responsibility to actively share carrier information. Concurrent responsibilities are working collaboratively with the Ministry of Health/District General Hospital to plan and implement services for SCD; ensuring counselling services support family stability as far as reasonably possible; and to build forms of community engagement and informed consent that counter risks of diagnostic interpretations of research.
Supervisor: Parker, Michael ; Molyneux, Catherine ; Fitzpatrick, Ray Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available
Keywords: Genetics (medical sciences) ; Ethics and communication in health care ; Public Health ; Families ; Gender ; Households ; Blood ; Clinical genetics ; Haematology ; Tropical medicine ; Africa ; Kenya ; sickle cell disease ; empirical ethics ; international research ethics ; disclosure genetic findings ; family counselling