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International Ethical Safeguards: genetics and people with learning disabilities
Authors:Kate Diesfeld
Abstract:This paper discusses the ethical issues and international standards relating to genetic research on people with learning disabilities. Research protocols must acknowledge the people who are subjects of such research and must reflect emerging disability philosophies. This research provides a brief historical context and considers five issues of fundamental importance to people with learning disabilities through a discussion of participation in the research design, independent advocacy, justice, non-discrimination and autonomy. These concerns have been investigated in England and abroad, and it is therefore valuable to undertake a review of the legal and ethical context of genetic research for vulnerable people who may be deemed unable to provide consent.
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