Paulina Tindana, Aminu Yakubu & Jantina De Vries
Paulina Tindana, MHSc, DPhil, is a Senior Lecturer and Bioethicist at the Department of Health Policy, Planning and Management, School of Public Health University of Ghana.Previously, she worked at the Navrongo Health Research Centre in Northern Ghana as a Deputy Chief Health Research Officer. Her work focuses on the ethical, social, cultural and policy implications of biomedical research including genetics and genomics studies. She has been an active member of the H3Africa Consortium since 2013 and chaired the Community Engagement Working Group between 2015 to 2018. She is also involved in research ethics capacity building initiatives for researchers and members of research ethics committees in Africa.
Aminu Yakubu, MSc, is a PhD canditate at the University of Ibadan, Nigeria and a honorary research fellow at the Center for Boiethics and Research (CBR), Ibadan, Nigeria. Previously, he supported the work of Nigeria’s National Health Research Ethics Committee providing guidance to research ethics committee members and researcherson ethical oversight and ethical research conduct in Nigeria. He has been an active member of the H3Africa Consortium since 2013 and chaired the ethics and regulatory affairs working group between 2015 to 2017. His interests are in ethics of genomics research, research governance including research ethics committee issues and health system research ethics.
Jantina de Vries MSc, DPhil, is an Associate Professor in Bioethics at the Department of Medicine of the University of Cape Town. Her work focuses on developing ethical best practice for genomics research in Africa. She has contributed to developing an evidence base for best practice in informed consent for African genomics research, investigating ethical challenges relating to the sharing of African samples and data, exploring what constitutes fairness in African genomics research collaborations, and studying how genomic research may impact on stigma relating to disease. A second and equally important output relates to the translation of her work into forward-looking policies and best practice guidelines. Jantina obtained her DPhil through The Ethox Centre at the University of Oxford (2011), and an MSc degree in sociology at Wageningen University (2003). She was at the European University Institute between 2003-2004. She is a member of the WHO Expert Advisory Board on Gene Editing.
Aminu Yakubu, MSc, is a PhD canditate at the University of Ibadan, Nigeria and a honorary research fellow at the Center for Boiethics and Research (CBR), Ibadan, Nigeria. Previously, he supported the work of Nigeria’s National Health Research Ethics Committee providing guidance to research ethics committee members and researcherson ethical oversight and ethical research conduct in Nigeria. He has been an active member of the H3Africa Consortium since 2013 and chaired the ethics and regulatory affairs working group between 2015 to 2017. His interests are in ethics of genomics research, research governance including research ethics committee issues and health system research ethics.
Jantina de Vries MSc, DPhil, is an Associate Professor in Bioethics at the Department of Medicine of the University of Cape Town. Her work focuses on developing ethical best practice for genomics research in Africa. She has contributed to developing an evidence base for best practice in informed consent for African genomics research, investigating ethical challenges relating to the sharing of African samples and data, exploring what constitutes fairness in African genomics research collaborations, and studying how genomic research may impact on stigma relating to disease. A second and equally important output relates to the translation of her work into forward-looking policies and best practice guidelines. Jantina obtained her DPhil through The Ethox Centre at the University of Oxford (2011), and an MSc degree in sociology at Wageningen University (2003). She was at the European University Institute between 2003-2004. She is a member of the WHO Expert Advisory Board on Gene Editing.
Genomics Research in Africa: Taking Stakeholder Engagement Seriously
In a new Commentary recently published in BMC Medical Ethics the authors reflect on a series of consultative activities used by the H3Africa Ethics and Community Engagement working group with research ethics committees in Africa and the lessons learned in the development of an ethics and governance framework for best practices in genomic research and biobanking in Africa.
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The H3Africa Consortium
The Human Health and Heredity (H3Africa) Consortium fosters genomic research on the African continent, by supporting infrastructural development, capacity building and research. It is comprised of 48 funded projects with 11 focusing on exploring pertinent ethical issues including issues around informed consent, community engagement, stigma and return of individual genetic research results.
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