Literature DB >> 35041227

Towards equitable genomics governance in Africa: Guiding principles from theories of global health governance and the African moral theory of Ubuntu.

Nchangwi Syntia Munung1,2, Jantina de Vries1, Bridget Pratt3.   

Abstract

The post-genomics era promises a revolution characterized by precision medicine and the integration of genomics into almost every area of biomedical research. At the same time, there are concerns that if care is not taken, the genomics revolution may widen global inequities in science and health. In Africa, these concerns are primarily linked to the underrepresentation of African populations in genomics research, limited genomics research capacity in Africa and associated macro-level justice issues such as benefit sharing, inequitable international research collaborations, and the contribution of genomics to the health and research priorities of Africa. Addressing these concerns requires an in-depth reflection on how the ideals of global justice and equity may be advanced in genomics research. To contribute to the limited but growing scholarship on global genomics equity, especially in the African context, we performed a conceptual analysis of three accounts of justice and governance namely, Ubuntu, shared health governance and global governance of health, with the aim of identifying principles that could inform genomics governance in Africa. We used a convergence approach in the conceptual analysis, resulting in the identification of nine principles namely: solidarity, furthering the ideals of health justice, reciprocity, shared decision-making, shared resources, shared responsibility, mutual trust, transparency, and mutual collective accountability. Examples of how the principles may be applied are provided. We recommend that these principles should form the foundation of any mechanism that seeks to systematically advance justice, fairness and equity in genomics research in Africa and more broadly, global health and science equity.
© 2022 John Wiley & Sons Ltd.

Entities:  

Keywords:  Africa; bioethics; equity; genomics; global health justice; governance; research ethics

Mesh:

Year:  2022        PMID: 35041227      PMCID: PMC9050794          DOI: 10.1111/bioe.12995

Source DB:  PubMed          Journal:  Bioethics        ISSN: 0269-9702            Impact factor:   2.512


  39 in total

1.  Global health governance as shared health governance.

Authors:  Jennifer Prah Ruger
Journal:  J Epidemiol Community Health       Date:  2011-12-14       Impact factor: 3.710

2.  Linking research to global health equity: the contribution of product development partnerships to access to medicines and research capacity building.

Authors:  Bridget Pratt; Bebe Loff
Journal:  Am J Public Health       Date:  2013-09-12       Impact factor: 9.308

3.  Genomics is failing on diversity.

Authors:  Alice B Popejoy; Stephanie M Fullerton
Journal:  Nature       Date:  2016-10-13       Impact factor: 49.962

4.  Benefit Sharing for Human Genomics Research: Awareness and Expectations of Genomics Researchers in Sub-Saharan Africa.

Authors:  Nchangwi Syntia Munung; Jantina de Vries
Journal:  Ethics Hum Res       Date:  2020-11

5.  Governing for the Common Good.

Authors:  Jennifer Prah Ruger
Journal:  Health Care Anal       Date:  2015-12

Review 6.  Research governance: where did it come from, what does it mean?

Authors:  Sara Shaw; Petra M Boynton; Trisha Greenhalgh
Journal:  J R Soc Med       Date:  2005-11       Impact factor: 18.000

7.  The African Genome Variation Project shapes medical genetics in Africa.

Authors:  Deepti Gurdasani; Tommy Carstensen; Fasil Tekola-Ayele; Luca Pagani; Ioanna Tachmazidou; Konstantinos Hatzikotoulas; Savita Karthikeyan; Louise Iles; Martin O Pollard; Ananyo Choudhury; Graham R S Ritchie; Yali Xue; Jennifer Asimit; Rebecca N Nsubuga; Elizabeth H Young; Cristina Pomilla; Katja Kivinen; Kirk Rockett; Anatoli Kamali; Ayo P Doumatey; Gershim Asiki; Janet Seeley; Fatoumatta Sisay-Joof; Muminatou Jallow; Stephen Tollman; Ephrem Mekonnen; Rosemary Ekong; Tamiru Oljira; Neil Bradman; Kalifa Bojang; Michele Ramsay; Adebowale Adeyemo; Endashaw Bekele; Ayesha Motala; Shane A Norris; Fraser Pirie; Pontiano Kaleebu; Dominic Kwiatkowski; Chris Tyler-Smith; Charles Rotimi; Eleftheria Zeggini; Manjinder S Sandhu
Journal:  Nature       Date:  2014-12-03       Impact factor: 49.962

8.  Equity in international health research collaborations in Africa: Perceptions and expectations of African researchers.

Authors:  Nchangwi Syntia Munung; Bongani M Mayosi; Jantina de Vries
Journal:  PLoS One       Date:  2017-10-16       Impact factor: 3.240

9.  Genomics research in Africa and its impact on global health: insights from African researchers.

Authors:  N S Munung; B M Mayosi; J de Vries
Journal:  Glob Health Epidemiol Genom       Date:  2018-06-08

10.  Research capacity. Enabling the genomic revolution in Africa.

Authors:  Charles Rotimi; Akin Abayomi; Alash'le Abimiku; Victoria May Adabayeri; Clement Adebamowo; Ezekiel Adebiyi; Adebowale D Ademola; Adebowale Adeyemo; Dwomoa Adu; Dissou Affolabi; Godfred Agongo; Samuel Ajayi; Sally Akarolo-Anthony; Rufus Akinyemi; Albert Akpalu; Marianne Alberts; Orlando Alonso Betancourt; Ahmed Mansour Alzohairy; Gobena Ameni; Olukemi Amodu; Gabriel Anabwani; Kristian Andersen; Fatiu Arogundade; Oyedunni Arulogun; Danny Asogun; Rasheed Bakare; Naby Balde; Mary Lynn Baniecki; Christine Beiswanger; Alia Benkahla; Lara Bethke; Micheal Boehnke; Vincent Boima; James Brandful; Andrew I Brooks; Frank C Brosius; Chester Brown; Bruno Bucheton; David T Burke; Barrington G Burnett; Stacy Carrington-Lawrence; Nadia Carstens; John Chisi; Alan Christoffels; Richard Cooper; Heather Cordell; Nigel Crowther; Talishiea Croxton; Jantina de Vries; Leslie Derr; Peter Donkor; Seydou Doumbia; Audrey Duncanson; Ivy Ekem; Ahmed El Sayed; Mark E Engel; John C K Enyaru; Dean Everett; Faisal M Fadlelmola; Eyitayo Fakunle; Kenneth H Fischbeck; Anne Fischer; Onikepe Folarin; Junaid Gamieldien; Robert F Garry; Simani Gaseitsiwe; Rasheed Gbadegesin; Anita Ghansah; Maria Giovanni; Parham Goesbeck; F Xavier Gomez-Olive; Donald S Grant; Ravnit Grewal; Mark Guyer; Neil A Hanchard; Christian T Happi; Scott Hazelhurst; Branwen J Hennig; Christiane Hertz-; Winston Hide; Friedhelm Hilderbrandt; Christopher Hugo-Hamman; Muntaser E Ibrahim; Regina James; Yasmina Jaufeerally-Fakim; Carolyn Jenkins; Ute Jentsch; Pan-Pan Jiang; Moses Joloba; Victor Jongeneel; Fourie Joubert; Mukthar Kader; Kathleen Kahn; Pontiano Kaleebu; Saidi H Kapiga; Samar Kamal Kassim; Ishmael Kasvosve; Jonathan Kayondo; Bernard Keavney; Adeodata Kekitiinwa; Sheik Humarr Khan; Paul Kimmel; Mary-Claire King; Robert Kleta; Mathurin Koffi; Jeffrey Kopp; Matthias Kretzler; Judit Kumuthini; Samuel Kyobe; Catherine Kyobutungi; Daniel T Lackland; Karen A Lacourciere; Guida Landouré; Rita Lawlor; Thomas Lehner; Maia Lesosky; Naomi Levitt; Katherine Littler; Zane Lombard; Jeanne F Loring; Sylvester Lyantagaye; Annette Macleod; Ebony B Madden; Chengetai R Mahomva; Julie Makani; Manmak Mamven; Marape Marape; Graeme Mardon; Patricia Marshall; Darren P Martin; Daniel Masiga; Robin Mason; Michael Mate-Kole; Enock Matovu; Mary Mayige; Bongani M Mayosi; Jean Claude Mbanya; Sheryl A McCurdy; Mark I McCarthy; Helen McIlleron; S O Mc'Ligeyo; Corrine Merle; Ana Olga Mocumbi; Charles Mondo; John V Moran; Ayesha Motala; Marva Moxey-Mims; Wata Sununguko Mpoloka; Chisomo L Msefula; Thuli Mthiyane; Nicola Mulder; Gebregziab her Mulugeta; Dieuodonne Mumba; John Musuku; Mo Nagdee; Oyekanmi Nash; Daouda Ndiaye; Anh Quynh Nguyen; Mark Nicol; Oathokwa Nkomazana; Shane Norris; Betty Nsangi; Alexander Nyarko; Moffat Nyirenda; Eileen Obe; Reginald Obiakor; Abraham Oduro; Solomon F Ofori-Acquah; Okechukwu Ogah; Stephen Ogendo; Kwaku Ohene-Frempong; Akinlolu Ojo; Timothy Olanrewaju; John Oli; Charlotte Osafo; Odile Ouwe Missi Oukem-Boyer; Bruce Ovbiagele; Andrew Owen; Mayowa Ojo Owolabi; Lukman Owolabi; Ellis Owusu-Dabo; Guillaume Pare; Rulan Parekh; Hugh G Patterton; Margaret B Penno; Jane Peterson; Rembert Pieper; Jacob Plange-Rhule; Martin Pollak; Julia Puzak; Rajkumar S Ramesar; Michele Ramsay; Rebekah Rasooly; Shiksha Reddy; Pardis C Sabeti; Kwamena Sagoe; Tunde Salako; Oumar Samassékou; Manjinder S Sandhu; Osman Sankoh; Fred Stephen Sarfo; Marie Sarr; Gasnat Shaboodien; Issa Sidibe; Gustave Simo; Martin Simuunza; Liam Smeeth; Eugene Sobngwi; Himla Soodyall; Hermann Sorgho; Oumou Sow Bah; Sudha Srinivasan; Dan J Stein; Ezra S Susser; Carmen Swanepoel; Godfred Tangwa; Andrew Tareila; Ozlem Tastan Bishop; Bamidele Tayo; Nicki Tiffin; Halidou Tinto; Ekaete Tobin; Stephen Meir Tollman; Mahamadou Traoré; Marsha J Treadwell; Jennifer Troyer; Masego Tsimako-Johnstone; Vincent Tukei; Ifeoma Ulasi; Nzovu Ulenga; Beverley van Rooyen; Ablo Prudence Wachinou; Salina P Waddy; Alisha Wade; Misaki Wayengera; James Whitworth; Louise Wideroff; Cheryl A Winkler; Sarah Winnicki; Ambroise Wonkam; Mengistu Yewondwos; Tadase sen; Nathan Yozwiak; Heather Zar
Journal:  Science       Date:  2014-06-20       Impact factor: 47.728

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