[PDF][PDF] Genetics and Indigenous communities: ethical issues

EE Kowal - International Encyclopedia of the Social & Behavioral …, 2015 - researchgate.net
International Encyclopedia of the Social & Behavioral Sciences, 2015researchgate.net
Indigenous people stand to benefit from advances in genomic technology, but genetic
research in Indigenous communities has been controversial. This article reviews the ethical
issues that Indigenous people and others have raised with reference to genetic research
projects and biobanks. The ethical issues that apply to Indigenous people should be seen
as additional to 'conventional'ethical issues that apply to all people, rather than replacing
them. The additional ethical concerns discussed include group harm; cultural beliefs relating …
Abstract
Indigenous people stand to benefit from advances in genomic technology, but genetic research in Indigenous communities has been controversial. This article reviews the ethical issues that Indigenous people and others have raised with reference to genetic research projects and biobanks. The ethical issues that apply to Indigenous people should be seen as additional to ‘conventional’ethical issues that apply to all people, rather than replacing them. The additional ethical concerns discussed include group harm; cultural beliefs relating to biospecimens and human origins; community engagement and collective consent; benefit; ownership; and whether biospecimens can and should be ‘repatriated.’Human genetic research is a rapidly developing field that addresses a range of scientific and health problems. Our understanding of past human population movements and microevolutionary processes has greatly improved in recent years with advances in genomics and bioinformatics. In the field of health, the future of genomics promises a ‘personalized’approach to medicine where many health care decisions are based on one’s individual genome, a future foreshadowed by the direct-to-consumer genetic testing industry (see Direct-to-Consumer Personal Genetic Testing). Indigenous people have been involved in many genetic ancestry-and health-related projects.(The Australian convention to capitalize ‘Indigenous’ is followed in this article.) Their participation has been sought out on the basis that their genetic material is highly informative for studies of population history and disease, but also because they may benefit, particularly from genetic studies of rare heritable diseases that affect their communities. However, Indigenous involvement in genetic research has often resulted in acrimony. These experiences reinforce the need for a robust and broad approach to ethics in this specialized research context.
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