Precision Medicine and Advancing Genetic Technologies—Disability and Human Rights Perspectives

Aisling De Paor and Peter Blanck
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Aisling De Paor: School of Law & Government, Dublin City University, Glasnevin, Dublin 9, Ireland
Peter Blanck: Burton Blatt Institute, Syracuse University, 900 Crouse- Hinds Hall, Suite 300, Syracuse, NY 13244-6070, USA

Laws, 2016, vol. 5, issue 3, 1-23

Abstract: Scientific and technological developments are propelling genetics and genetic technologies into the public sphere. Scientific and technological innovation is becoming more refined, resulting in an increase in the availability and use of genetic testing, and other cutting edge genetic technologies, including gene editing. These genetic advances not only signal a growing trend towards precision medicine, but also provoke consideration of the protection of genetic information as an emerging human rights concern. Particular ethical and legal issues arise from a disability perspective, including the potential for discrimination and privacy violations. In consideration of the intersection of genetics and disability, this article highlights the significant concerns raised as genetic science and technology advances, and the consequences for disability rights, particularly the core concepts of non-discrimination, and respect for diversity and difference. On examining international human rights perspectives, it looks particularly at the UN Convention on the Rights of Persons with Disabilities and how it may be used to guide best practice in this area. With an acknowledgement of historical abuses of genetic science, this article highlights the need to maintain caution as to the potential consequences of advancing genetic technologies on persons with disabilities and indeed on society as a whole.

Keywords: genetics; new technologies; disability; law; human rights; regulation (search for similar items in EconPapers)
JEL-codes: D78 E61 E62 F13 F42 F68 K0 K1 K2 K3 K4 (search for similar items in EconPapers)
Date: 2016
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