“I didn’t have anything to decide, I wanted to help my kids”—An interview-based study of consent procedures for sampling human biological material for genetic research in rural Pakistan
AJOB Empirical Bioethics 9 (3):113-127 (2018)
AbstractBackground: Individual, comprehensive, and written informed consent is broadly considered an ethical obligation in research involving the sampling of human material. In developing countries, however, local conditions, such as widespread illiteracy, low levels of education, and hierarchical social structures, complicate compliance with these standards. As a result, researchers may modify the consent process to secure participation. To evaluate the ethical status of such modified consent strategies it is necessary to assess the extent to which local practices accord with the values underlying informed consent. Methods: Over a 2-week period in April 2014 we conducted semistructured interviews with researchers from a genetic research institute in rural Pakistan and families who had given blood samples for their research. Interviews with researchers focused on the institute’s requirements for consent, and the researchers’ strategies for and experiences with obtaining consent in the field. Interviews with donors focused on their motivation for donating samples, their experience of consent and donation, and what factors were central in their decisions to give consent. Results: Researchers often reported modifications to consent procedures suited to the local context, standardly employing oral and elder consent, and tailoring information to the social education level of donor families. Central themes in donors’ accounts of their decision to consent were the hope of getting something out of their participation and their remarkably high levels of trust in the researchers. Several donor accounts indicated a degree of confusion about participation and diagnosis, resulting in misconceived expectations of therapeutic benefits. Conclusions: We argue that while building and maintaining trusting relationships in research is important—not least in developing countries—strategies that serve this endeavor should be supplemented with efforts to ensure proper provision and understanding of relevant information, specifically about the nature of research and measures for individual consent and opt-out.
Similar books and articles
Is Consent Based on Trust Morally Inferior to Consent Based on Information?Nana Cecilie Halmsted Kongsholm & Klemens Kappel - 2017 - Bioethics 31 (6):432-442.
Genetic research with stored biological materials: ethics and practice.Leslie E. Wolf, Timothy A. Bouley & Charles E. McCulloch - 2010 - IRB: Ethics & Human Research 32 (2):7.
Alternatives of Informed Consent for Storage and Use of Human Biological Material for Research Purposes: Brazilian Regulation.Gabriela Marodin, Paulo Henrique Condeixa de França, Jennifer Braathen Salgueiro, Marcia Luz da Motta, Gysélle Saddi Tannous & Anibal Gil Lopes - 2012 - Developing World Bioethics 12 (3):127-131.
Turning residual human biological materials into research collections: playing with consent.Eugenijus Gefenas, Vilius Dranseika, Jurate Serepkaite, Asta Cekanauskaite, Luciana Caenazzo, Bert Gordijn, Renzo Pegoraro & Elizabeth Yuko - 2012 - Journal of Medical Ethics 38 (6):351-355.
Split views among parents regarding children's right to decide about participation in research: a questionnaire survey.U. Swartling, G. Helgesson, M. G. Hansson & J. Ludvigsson - 2009 - Journal of Medical Ethics 35 (7):450-455.
Informed consent, participation in, and withdrawal from a population based cohort study involving genetic analysis.K. Matsui - 2005 - Journal of Medical Ethics 31 (7):385-392.
Analysis of Consent Validity for Invasive, Nondiagnostic Research Procedures.Jonathan Kimmelman, Trudo Lemmens & Scott Kim - 2012 - IRB: Ethics & Human Research 34 (5):1-7.
Seeking consent to genetic and genomic research in a rural Ghanaian setting: a qualitative study of the MalariaGEN experience. [REVIEW]P. Tindana, S. Bull, L. Amenga-Etego, J. Vries, R. Aborigo, K. Koram, D. Kwiatkowski & M. Parker - 2012 - BMC Medical Ethics 13 (1):15-15.
Consent, trust and ethics: reflections on the findings of an interview based study with people donating blood for genetic research for research within the NHS.Helen Busby - 2006 - Clinical Ethics 1 (4):211-215.
Broadening consent--and diluting ethics?B. Hofmann - 2009 - Journal of Medical Ethics 35 (2):125-129.
Ewolucja koncepcji świadomej zgody w kontekście badań naukowych z użyciem ludzkiego materiału biologicznego.Jakub Pawlikowski - 2015 - Diametros 44:89-109.
Research ethics: Who should consent for research in adult intensive care? Preferences of patients and their relatives: a pilot study.C. Chenaud, P. Merlani, M. Verdon & B. Ricou - 2009 - Journal of Medical Ethics 35 (11):709-712.
'Appropriate consent' and the use of human material for research purposes: the competent adult.J. V. McHale - 2006 - Clinical Ethics 1 (4):195-199.
Added to PP
Historical graph of downloads
Citations of this work
No citations found.
References found in this work
Principles of Biomedical Ethics.Ezekiel J. Emanuel, Tom L. Beauchamp & James F. Childress - 1995 - Hastings Center Report 25 (4):37.
False Hopes and Best Data: Consent to Research and the Therapeutic Misconception.Paul S. Appelbaum, Loren H. Roth, Charles W. Lidz, Paul Benson & William Winslade - 1987 - Hastings Center Report 17 (2):20-24.