Seeking consent to genetic and genomic research in a rural Ghanaian setting: A qualitative study of the MalariaGEN experience [Book Review]
David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Jack Alan Reynolds
Learn more about PhilPapers
Paulina Tindana, Susan Bull, Lucas Amenga-Etego, Jantina de Vries, Raymond Aborigo, Kwadwo Koram, Dominic Kwiatkowski & Michael Parker
BMC Medical Ethics 13 (1):15- (2012)
Background: Seeking consent for genetic and genomic research can be challenging, particularly in populations with low literacy levels, and in emergency situations. All of these factors were relevant to the MalariaGEN study of genetic factors influencing immune responses to malaria in northern rural Ghana. This study sought to identify issues arising in practice during the enrolment of paediatric cases with severe malaria and matched healthy controls into the MalariaGEN study. Methods: The study used a rapid assessment incorporating multiple qualitative methods including in depth interviews, focus group discussions and observations of consent processes. Differences between verbal information provided during community engagement processes, and consent processes during the enrolment of cases and controls were identified, as well as the factors influencing the tailoring of such information. Results: MalariaGEN participants and field staff seeking consent were generally satisfied with their understanding of the project and were familiar with aspects of the study relating to malaria. Some genetic aspects of the study were also well understood. Participants and staff seeking consent were less aware of the methodologies employed during genomic research and their implications, such as the breadth of data generated and the potential for future secondary research.Moreover, trust in and previous experience with the Navrongo Health Research Centre which was conducting the research influenced beliefs about the benefits of participating in the MalariaGEN study and subsequent decision-making about research participation. Conclusions: It is important to recognise that some aspects of complex genomic research may be of less interest to and less well understood by research participants and that such gaps in understanding may not be entirely addressed by best practice in the design and conduct of consent processes. In such circumstances consideration needs to be given to additional protections for participants that may need to be implemented in such research, and how best to provide such protections.Capacity building for research ethics committees with limited familiarity with genetic and genomic research, and appropriate engagement with communities to elicit opinions of the ethical issues arising and acceptability of downstream uses of genome wide association data are likely to be important
|Keywords||Consent Genetic research Genomic research Research ethics Qualitative research Ghana Africa|
|Categories||categorize this paper)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library|
References found in this work BETA
Angela Ballantyne (2008). 'Fair Benefits' Accounts of Exploitation Require a Normative Principle of Fairness: Response to Gbadegesin and Wendler, and Emanuel Et Al. Bioethics 22 (4):239–244.
Allen Buchanan & Matthew DeCamp (2006). Responsibility for Global Health. Theoretical Medicine and Bioethics 27 (1):95-114.
A. Dawson (2006). Mass Public Health Programmes and the Obligations of Sponsoring and Participating Organisations. Journal of Medical Ethics 32 (10):580-583.
Segun Gbadegesin & David Wendler (2006). Protecting Communities in Health Research From Exploitation. Bioethics 20 (5):248-253.
Daniel M. Hausman (2007). Group Risks, Risks to Groups, and Group Engagement in Genetics Research. Kennedy Institute of Ethics Journal 17 (4):351-369.
Citations of this work BETA
No citations found.
Similar books and articles
Rachel Vreeman, Eunice Kamaara, Allan Kamanda, David Ayuku, Winstone Nyandiko, Lukoye Atwoli, Samuel Ayaya, Peter Gisore, Michael Scanlon & Paula Braitstein (2012). A Qualitative Study Using Traditional Community Assemblies to Investigate Community Perspectives on Informed Consent and Research Participation in Western Kenya. BMC Medical Ethics 13 (1):23-.
Judy Allen & Beverley Mcnamara (2011). Reconsidering the Value of Consent in Biobank Research. Bioethics 25 (3):155-166.
Eric R. Pedersen, Clayton Neighbors, Judy Tidwell & Ty W. Lostutter (2011). Do Undergraduate Student Research Participants Read Psychological Research Consent Forms? Examining Memory Effects, Condition Effects, and Individual Differences. Ethics and Behavior 21 (4):332 - 350.
Asya Al-Riyami, Deepali Jaju, Sanjay Jaju & Henry J. Silverman (2011). The Adequacy of Informed Consent Forms in Genetic Research in Oman: A Pilot Study. Developing World Bioethics 11 (2):57-62.
Oonagh Corrigan (ed.) (2009). The Limits of Consent: A Socio-Ethical Approach to Human Subject Research in Medicine. Oxford University Press.
Sarah Knerr, Dawn Wayman & Vence L. Bonham (2011). Inclusion of Racial and Ethnic Minorities in Genetic Research: Advance the Spirit by Changing the Rules? Journal of Law, Medicine and Ethics 39 (3):502-512.
David S. Festinger, Kattiya Ratanadilok, Douglas B. Marlowe, Karen L. Dugosh, Nicholas S. Patapis & David S. DeMatteo (2007). Neuropsychological Functioning and Recall of Research Consent Information Among Drug Court Clients. Ethics and Behavior 17 (2):163 – 186.
Gordon R. Mitchell (2001). Defining the Subject of Consent in DNA Research. Journal of Medical Humanities 22 (1):41-53.
Dorcas M. Kamuya, Sally J. Theobald, Patrick K. Munywoki, Dorothy Koech, Wenzel P. Geissler & Sassy C. Molyneux (2013). Evolving Friendships and Shifting Ethical Dilemmas: Fieldworkers' Experiences in a Short Term Community Based Study in Kenya. Developing World Bioethics 13 (1):1-9.
Robert F. Weir & Jay R. Horton (1995). Genetic Research, Adolescents, and Informed Consent. Theoretical Medicine and Bioethics 16 (4).
Rogeer Hoedemaekers, Bert Gordijn & Martien Pijnenburg (2006). Does an Appeal to the Common Good Justify Individual Sacrifices for Genomic Research? Theoretical Medicine and Bioethics 27 (5):415-431.
Michelle H. Biros (2007). Research Without Consent: Exception From and Waiver of Informed Consent in Resuscitation Research. Science and Engineering Ethics 13 (3):361-369.
David Wendler & Christine Grady (2008). What Should Research Participants Understand to Understand They Are Participants in Research? Bioethics 22 (4):203–208.
Pauline E. Osamor & Nancy Kass (2012). Decision-Making and Motivation to Participate in Biomedical Research in Southwest Nigeria. Developing World Bioethics 12 (2):87-95.
John Appiah-Poku, Sam Newton & Nancy Kass (2011). Participants' Perceptions of Research Benefits in an African Genetic Epidemiology Study. Developing World Bioethics 11 (3):128-135.
Added to index2011-10-04
Total downloads10 ( #145,860 of 1,100,852 )
Recent downloads (6 months)5 ( #58,660 of 1,100,852 )
How can I increase my downloads?