Developing World Bioethics 18 (2):156-164 (2018)
AbstractThe Human Heredity and Health in Africa Consortium is a conglomeration of research and infrastructure projects spread throughout Africa whose aim is to apply genomic methodology to diseases affecting the people in the region. Its operation is innovative in the sense that it is doing something new; that is, filling a hitherto existing void in genomic research capability of African scientists and infusing resources and manpower to institutions and investigators across Africa. But aside from developing and sustaining capacity in genomic research and biorepositories, H3Africa is also invested in developing appropriate ethical regulatory regime to govern research in these areas. This latter concern –research ethics governance – is the major subject of this paper. Specifically, the paper discusses protection of research participants as envisaged by H3Africa in the area of consent, safeguarding privacy, maintaining confidentiality of health information and sharing of data/biospecimens. The ultimate goal is to determine whether H3Africa initiatives and processes are consistent or at odds with international guidelines and best practices.
Similar books and articles
Biobank/Genomic Research in Nigeria: Examining Relevant Privacy and Confidentiality Frameworks.Obiajulu Nnamuchi - 2015 - Journal of Law, Medicine and Ethics 43 (4):776-786.
A Perpetual Source of DNA or Something Really Different: Ethical Issues in the Creation of Cell Lines for African Genomics Research.Jantina de Vries, Akin Abayomi, James Brandful, Katherine Littler, Ebony Madden, Patricia Marshall, Odile Ouwe Oukem-Boyer & Janet Seeley - 2014 - BMC Medical Ethics 15 (1):60.
“I Passed the Test!” Evidence of Diagnostic Misconception in the Recruitment of Population Controls for an H3Africa Genomic Study in Cape Town, South Africa.Francis Masiye, Bongani Mayosi & Jantina de Vries - 2017 - BMC Medical Ethics 18 (1):12.
Regulation of Genomic and Biobanking Research in Africa: A Content Analysis of Ethics Guidelines, Policies and Procedures From 22 African Countries.Jantina de Vries, Syntia Nchangwi Munung, Alice Matimba, Sheryl McCurdy, Odile Ouwe Missi Oukem-Boyer, Ciara Staunton, Aminu Yakubu & Paulina Tindana - 2017 - BMC Medical Ethics 18 (1):1-9.
Genomic Research Data: Open Vs. Restricted Access.David B. Resnik - 2010 - IRB: Ethics & Human Research 32 (1):1.
Research Participants’ Perceptions and Views on Consent for Biobank Research: A Review of Empirical Data and Ethical Analysis.Flavio D'Abramo, Jan Schildmann & Jochen Vollmann - 2015 - BMC Medical Ethics 16 (1):60.
Obtaining Informed Consent for Genomics Research in Africa: Analysis of H3Africa Consent Documents.Nchangwi Syntia Munung, Patricia Marshall, Megan Campbell, Katherine Littler, Francis Masiye, Odile Ouwe-Missi-Oukem-Boyer, Janet Seeley, D. J. Stein, Paulina Tindana & Jantina de Vries - 2016 - Journal of Medical Ethics 42 (2):132-137.
Regulation of Biobanks in France.Emmanuelle Rial-Sebbag & Anna Pigeon - 2015 - Journal of Law, Medicine and Ethics 43 (4):754-765.
Biobanks--When is Re-Consent Necessary?K. S. Steinsbekk & B. Solberg - 2011 - Public Health Ethics 4 (3):236-250.
Perceptions of Research Assistants on How Their Research Participants View Informed Consent and Its Documentation in Africa.Bagamba B. Araali - 2011 - Research Ethics 7 (2):39-50.
Biobank Research and the Right to Privacy.Lars Øystein Ursin - 2008 - Theoretical Medicine and Bioethics 29 (4):267-285.
Ethical Issues in Human Genomics Research in Developing Countries.Jantina de Vries, Susan J. Bull, Ogobara Doumbo, Muntaser Ibrahim, Odile Mercereau-Puijalon, Dominic Kwiatkowski & Michael Parker - 2011 - BMC Medical Ethics 12 (1):5.
Reconsidering the Value of Consent in Biobank Research.Beverley Mcnamara Judy Allen - 2011 - Bioethics 25 (3):155-166.
National Ethics Guidance in Sub-Saharan Africa on the Collection and Use of Human Biological Specimens: A Systematic Review.Francis Barchi & Madison T. Little - 2016 - BMC Medical Ethics 17 (1):64.
Challenges in Biobank Governance in Sub-Saharan Africa.Ciara Staunton & Keymanthri Moodley - 2013 - BMC Medical Ethics 14 (1):35.
Added to PP
Historical graph of downloads