Impact of social stigma on the process of obtaining informed consent for genetic research on podoconiosis: a qualitative study
David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Jack Alan Reynolds
Learn more about PhilPapers
Fasil Tekola, Susan Bull, Bobbie Farsides, Melanie J. Newport, Adebowale Adeyemo, Charles N. Rotimi & Gail Davey
BMC Medical Ethics 10 (1):13- (2009)
BackgroundThe consent process for a genetic study is challenging when the research is conducted in a group stigmatized because of beliefs that the disease is familial. Podoconiosis, also known as 'mossy foot', is an example of such a disease. It is a condition resulting in swelling of the lower legs among people exposed to red clay soil. It is a very stigmatizing problem in endemic areas of Ethiopia because of the widely held opinion that the disease runs in families and is untreatable. The aim of this study was to explore the impact of social stigma on the process of obtaining consent for a study on the genetics of podoconiosis in Southern Ethiopia.MethodsWe adapted a rapid assessment tool validated in The Gambia. The methodology was qualitative involving focus-group discussions (n = 4) and in-depth interviews (n = 25) with community members, fieldworkers, researchers and staff of the Mossy Foot Treatment and Prevention Association (MFTPA) working on prevention and treatment of podoconiosis.ResultsWe found that patients were afraid of participation in a genetic study for fear the study might aggravate stigmatization by publicizing the familial nature of the disease. The MFTPA was also concerned that discussion about the familial nature of podoconiosis would disappoint patients and would threaten the trust they have in the organization. In addition, participants of the rapid assessment stressed that the genetic study should be approved at family level before prospective participants are approached for consent. Based on this feedback, we developed and implemented a consent process involving community consensus and education of fieldworkers, community members and health workers. In addition, we utilized the experience and established trust of the MFTPA to diminish the perceived risk.ConclusionThe study showed that the consent process developed based on issues highlighted in the rapid assessment facilitated recruitment of participants and increased their confidence that the genetic research would not fuel stigma. Therefore, investigators must seek to assess and address risks of research from prospective participants' perspectives. This involves understanding the issues in the society, the culture, community dialogues and developing a consent process that takes all these into consideration
|Keywords||No keywords specified (fix it)|
|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
No references found.
Citations of this work BETA
Dorcas M. Kamuya, Vicki Marsh, Francis K. Kombe, P. Wenzel Geissler & Sassy C. Molyneux (2013). Engaging Communities to Strengthen Research Ethics in Low‐Income Settings: Selection and Perceptions of Members of a Network of Representatives in Coastal Kenya. Developing World Bioethics 13 (1):10-20.
Galen Wright, Pieter Koornhof, Adebowale Adeyemo & Nicki Tiffin (2013). Ethical and Legal Implications of Whole Genome and Whole Exome Sequencing in African Populations. BMC Medical Ethics 14 (1):21.
Jantina de Vries, Susan J. Bull, Ogobara Doumbo, Muntaser Ibrahim, Odile Mercereau-Puijalon, Dominic Kwiatkowski & Michael Parker (2011). Ethical Issues in Human Genomics Research in Developing Countries. BMC Medical Ethics 12 (1):5.
Similar books and articles
Deborah Yeager-Woodhouse & John Sivell (2006). Prepackaged Tour Versus Personal Journey: The Meaning of Informed Consent in the Context of the Teacher-Study Group. [REVIEW] Journal of Academic Ethics 4 (1-4):189-203.
Leonard J. Haas (1991). Hide-and-Seek or Show-and-Tell? Emerging Issues of Informed Consent. Ethics and Behavior 1 (3):175 – 189.
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.
Silvana Ferreira Bento, Ellen Hardy & Maria José Duarte Osis (2008). Process for Obtaining Informed Consent: Women's Opinions. Developing World Bioethics 8 (3):197-206.
Oonagh Corrigan (ed.) (2009). The Limits of Consent: A Socio-Ethical Approach to Human Subject Research in Medicine. Oxford University Press.
Janet L. Brody, John P. Cluck & Alfredo S. Aragon (1997). Participants' Understanding of the Process of Psychological Research: Informed Consent. Ethics and Behavior 7 (4):285 – 298.
Benedetto Vitiello (2008). Effectively Obtaining Informed Consent for Child and Adolescent Participation in Mental Health Research. Ethics and Behavior 18 (2 & 3):182 – 198.
Robert F. Weir & Jay R. Horton (1995). Genetic Research, Adolescents, and Informed Consent. Theoretical Medicine and Bioethics 16 (4).
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.
Pamela Fisher (2012). Ethics in Qualitative Research: 'Vulnerability', Citizenship and Human Rights. Ethics and Social Welfare 6 (1):2-17.
James R. P. Ogloff & Randy K. Otto (1991). Are Research Participants Truly Informed? Readability of Informed Consent Forms Used in Research. Ethics and Behavior 1 (4):239 – 252.
Timothy Caulfield, Ross Upshur & Abdallah Daar (2003). DNA Databanks and Consent: A Suggested Policy Option Involving an Authorization Model. [REVIEW] BMC Medical Ethics 4 (1):1-4.
David S. Festinger, Karen L. Dugosh, Jason R. Croft, Patricia L. Arabia & Douglas B. Marlowe (2011). Do Research Intermediaries Reduce Perceived Coercion to Enter Research Trials Among Criminally Involved Substance Abusers? Ethics and Behavior 21 (3):252 - 259.
Gordon R. Mitchell (2001). Defining the Subject of Consent in DNA Research. Journal of Medical Humanities 22 (1):41-53.
Rachel E. Dew (2007). Informed Consent for Research in Borderline Personality Disorder. BMC Medical Ethics 8 (1):1-4.
Added to index2010-08-24
Total downloads11 ( #154,407 of 1,410,004 )
Recent downloads (6 months)1 ( #176,758 of 1,410,004 )
How can I increase my downloads?