Literature DB >> 22493187

Genomic sovereignty and the African promise: mining the African genome for the benefit of Africa.

Jantina de Vries1, Michael Pepper.   

Abstract

Scientific interest in genomics in Africa is on the rise with a number of funding initiatives aimed specifically at supporting research in this area. Genomics research on material of African origin raises a number of important ethical issues. A prominent concern relates to sample export, which is increasingly seen by researchers and ethics committees across the continent as being problematic. The concept of genomic sovereignty proposes that unique patterns of genomic variation can be found in human populations, and that these are commercially, scientifically or symbolically valuable and in need of protection against exploitation. Although it is appealing as a response to increasing concerns regarding sample export, there are a number of important conceptual problems relating to the term. It is not clear, for instance, whether it is appropriate that ownership over human genomic samples should rest with national governments. Furthermore, ethnic groups in Africa are frequently spread across multiple nation states, and protection offered in one state may not prevent researchers from accessing the same group elsewhere. Lastly, scientific evidence suggests that the assumption that genomic data is unique for population groups is false. Although the frequency with which particular variants are found can differ between groups, such genes or variants per se are not unique to any population group. In this paper, the authors describe these concerns in detail and argue that the concept of genomic sovereignty alone may not be adequate to protect the genetic resources of people of African descent.

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Year:  2012        PMID: 22493187     DOI: 10.1136/medethics-2011-100448

Source DB:  PubMed          Journal:  J Med Ethics        ISSN: 0306-6800            Impact factor:   2.903


  15 in total

1.  Public Health Pharmacogenomics and the Design Principles for Global Public Goods - Moving Genomics to Responsible Innovation.

Authors:  Vural Ozdemir; Alexander Borda-Rodriguez; Edward S Dove; Lynnette R Ferguson; Farah Huzair; Vangelis G Manolopoulos; Mario Masellis; Djims Milius; Louise Warnich; Sanjeeva Srivastava
Journal:  Curr Pharmacogenomics Person Med       Date:  2013-03-24

2.  From "Personalized" to "Precision" Medicine: The Ethical and Social Implications of Rhetorical Reform in Genomic Medicine.

Authors:  Eric Juengst; Michelle L McGowan; Jennifer R Fishman; Richard A Settersten
Journal:  Hastings Cent Rep       Date:  2016-09       Impact factor: 2.683

3.  Genomic Essentialism: Its Provenance and Trajectory as an Anticipatory Ethical Concern.

Authors:  Maya Sabatello; Eric Juengst
Journal:  Hastings Cent Rep       Date:  2019-05       Impact factor: 2.683

4.  Ethical, social, and cultural issues related to clinical genetic testing and counseling in low- and middle-income countries: a systematic review.

Authors:  Adrina Zhong; Benedict Darren; Bethina Loiseau; Li Qun Betty He; Trillium Chang; Jessica Hill; Helen Dimaras
Journal:  Genet Med       Date:  2018-08-03       Impact factor: 8.822

5.  Sharing Public Health Research Data: Toward the Development of Ethical Data-Sharing Practice in Low- and Middle-Income Settings.

Authors:  Michael Parker; Susan Bull
Journal:  J Empir Res Hum Res Ethics       Date:  2015-07       Impact factor: 1.742

Review 6.  Big data, open science and the brain: lessons learned from genomics.

Authors:  Suparna Choudhury; Jennifer R Fishman; Michelle L McGowan; Eric T Juengst
Journal:  Front Hum Neurosci       Date:  2014-05-16       Impact factor: 3.169

7.  Exploring Overlaps Between the Genomic and Environmental Determinants of LVH and Stroke: A Multicenter Study in West Africa.

Authors:  Abiodun M Adeoye; Bruce Ovbiagele; Philip Kolo; Lambert Appiah; Akinyemi Aje; Oladimeji Adebayo; Fred Sarfo; Joshua Akinyemi; Gregory Adekunle; Francis Agyekum; Vincent Shidali; Okechukwu Ogah; Dan Lackland; Mulugeta Gebregziabher; Donna Arnett; Hemant K Tiwari; Rufus Akinyemi; Ojo Olakanmi Olagoke; Ayodipupo Sikiru Oguntade; Taiwo Olunuga; Kelechi Uwanruochi; Carolyn Jenkins; Patrick Adadey; Henry Iheonye; Lukman Owolabi; Reginald Obiako; Samuel Akinjopo; Kevin Armstrong; Albert Akpalu; Adekunle Fakunle; Raelle Saulson; Mayowa Aridegbe; Paul Olowoyo; Godwin Osaigbovo; Josephine Akpalu; Bimbo Fawale; Philip Adebayo; Oyedunni Arulogun; Philip Ibinaiye; Atinuke Agunloye; Naser Ishaq; Kolawole Wahab; Onoja Akpa; Omisore Adeleye; Andrew Bock-Oruma; Godwin Ogbole; Sylvia Melikam; Joseph Yaria; Luqman Ogunjimi; Abdul Salaam; Taofiki Sunmonu; Akintomiwa Makanjuola; Temitope Farombi; Ruth Laryea; Ezinne Uvere; Salaam Kehinde; Innocent Chukwuonye; Paschal Azuh; Morenikeji Komolafe; Adeseye Akintunde; Olugbo Obiabo; Olusegun Areo; Issa Kehinde; Adeniyi G Amusa; Mayowa Owolabi
Journal:  Glob Heart       Date:  2017-03-13

8.  Ethical and legal implications of whole genome and whole exome sequencing in African populations.

Authors:  Galen E B Wright; Pieter G J Koornhof; Adebowale A Adeyemo; Nicki Tiffin
Journal:  BMC Med Ethics       Date:  2013-05-28       Impact factor: 2.652

9.  A perpetual source of DNA or something really different: ethical issues in the creation of cell lines for African genomics research.

Authors:  Jantina de Vries; Akin Abayomi; James Brandful; Katherine Littler; Ebony Madden; Patricia Marshall; Odile Ouwe Missi Oukem-Boyer; Janet Seeley
Journal:  BMC Med Ethics       Date:  2014-08-07       Impact factor: 2.652

10.  H3ABioNet, a sustainable pan-African bioinformatics network for human heredity and health in Africa.

Authors:  Nicola J Mulder; Ezekiel Adebiyi; Raouf Alami; Alia Benkahla; James Brandful; Seydou Doumbia; Dean Everett; Faisal M Fadlelmola; Fatima Gaboun; Simani Gaseitsiwe; Hassan Ghazal; Scott Hazelhurst; Winston Hide; Azeddine Ibrahimi; Yasmina Jaufeerally Fakim; C Victor Jongeneel; Fourie Joubert; Samar Kassim; Jonathan Kayondo; Judit Kumuthini; Sylvester Lyantagaye; Julie Makani; Ahmed Mansour Alzohairy; Daniel Masiga; Ahmed Moussa; Oyekanmi Nash; Odile Ouwe Missi Oukem-Boyer; Ellis Owusu-Dabo; Sumir Panji; Hugh Patterton; Fouzia Radouani; Khalid Sadki; Fouad Seghrouchni; Özlem Tastan Bishop; Nicki Tiffin; Nzovu Ulenga
Journal:  Genome Res       Date:  2015-12-01       Impact factor: 9.438

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