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

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 in... Full description

Journal Title: Journal of Medical Ethics 2012-08, Vol.38 (8), p.474-478
Main Author: de Vries, Jantina
Other Authors: Pepper, Michael
Format: Electronic Article Electronic Article
Language: English
Subjects:
Quelle: Alma/SFX Local Collection
Publisher: England: BMJ Publishing Group Ltd and Institute of Medical Ethics
ID: ISSN: 0306-6800
Link: https://www.ncbi.nlm.nih.gov/pubmed/22493187
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title: Genomic sovereignty and the African promise: mining the African genome for the benefit of Africa
format: Article
creator:
  • de Vries, Jantina
  • Pepper, Michael
subjects:
  • Africa
  • African Continental Ancestry Group - genetics
  • African Continental Ancestry Group - legislation & jurisprudence
  • Bioethics
  • Censuses
  • Collaboration
  • collaborative global health research
  • Countries
  • Databases, Genetic - ethics
  • Databases, Genetic - legislation & jurisprudence
  • Developing Countries
  • Ethical aspects
  • ethics sample export
  • Ethnic groups
  • genethics
  • Genetic research
  • Genetic Research - ethics
  • Genetic Research - legislation & jurisprudence
  • Genetics
  • genetics and human ancestry
  • genome mapping
  • Genome, Human
  • Genomes
  • genomic sovereignty
  • Genomics
  • Genomics - ethics
  • Genomics - legislation & jurisprudence
  • Human genetics
  • Humans
  • Information Dissemination - ethics
  • Initiatives
  • Medical genetics
  • Metagenomics
  • Nation states
  • Population genetics
  • research ethics
  • Research methodology
  • Researchers
  • Science
  • sociology
  • Sovereignty
  • Studies
ispartof: Journal of Medical Ethics, 2012-08, Vol.38 (8), p.474-478
description: 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.
language: eng
source: Alma/SFX Local Collection
identifier: ISSN: 0306-6800
fulltext: fulltext
issn:
  • 0306-6800
  • 1473-4257
url: Link


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descriptionScientific 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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subjectAfrica ; African Continental Ancestry Group - genetics ; African Continental Ancestry Group - legislation & jurisprudence ; Bioethics ; Censuses ; Collaboration ; collaborative global health research ; Countries ; Databases, Genetic - ethics ; Databases, Genetic - legislation & jurisprudence ; Developing Countries ; Ethical aspects ; ethics sample export ; Ethnic groups ; genethics ; Genetic research ; Genetic Research - ethics ; Genetic Research - legislation & jurisprudence ; Genetics ; genetics and human ancestry ; genome mapping ; Genome, Human ; Genomes ; genomic sovereignty ; Genomics ; Genomics - ethics ; Genomics - legislation & jurisprudence ; Human genetics ; Humans ; Information Dissemination - ethics ; Initiatives ; Medical genetics ; Metagenomics ; Nation states ; Population genetics ; research ethics ; Research methodology ; Researchers ; Science ; sociology ; Sovereignty ; Studies
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abstractScientific 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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