Ground-breaking genetic discoveries and technological advances have introduced a new world of genetic exploration, and technological advances have facilitated the discovery of the genetic basis of a myriad of diseases. Genetic testing promises to potentially revolutionise health care and offer the potential of personalised medicine. Genetic technology may also offer the means to detect potential future disabilities. In light of rapid advances in genetic science and technology, questions arise as to whether an appropriate framework exists to protect the interests of individuals, prevent the misuse of genetic information by interested third parties, and also to encourage further advances in genetic science. In consideration of rapidly advancing genetic technologies and the ethical and legal concerns that arise, this article examines the regulation of genetic information, primarily from a theoretical perspective. It explores the preferable mode of regulation and choice of regulatory frameworks in legal theory, including non-discrimination, privacy and property.
S. Soina“Genetic Testing legislation in Western Europe—a fluctuating regulatory target”Journal of Community Genetics3 (2012) 143. See also O. Varga et al. “Definitions of genetic testing in European legal documents” Journal of Community Genetics 3 (2012) 125.
Concordat and Moratorium on Genetics.2011. Retrieved 9 March 2014 https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/216821/Concordat-and-Moratorium-on-Genetics-and-Insurance-20111.pdf.
T. McGleenan and U. Wiesling“Insurance and Genetics: European Policy Options”European Journal of Health Law7 (2000) 367372.
See generally P. LambertData Protection law in Ireland: sources and issues (Dublin: Clarus Press2013). See also P. Schwartz “European Data Protection Law and Restrictions on International Data Flows” Iowa Law Review 80 (1994) 471 471; M. Rotenberg and D. Jacobs “Updating the law of information privacy: the new framework of the European Union” Harvard Journal of Law and Policy 36(2) (2013) 605 609-611.
M. TaylorGenetic Data and the Law—A Critical Perspective on Privacy Protection (Cambridge: Cambridge University Press2012) p. 17. In this context Taylor refers to the literature and thinking of Margulis—see generally S. T. Margulis “Conceptions of privacy: current status and next steps” Journal of Social Issues 33(3) (1977) 5 10. See also S. T. Margulis “Privacy as a social issue and a behavioural concept” Journal of Social Issues 9(2) (2003) 243 245.
R. A. Spinello“Property rights in genetic information”Ethics and Technology6 (2004) 2930. See also B. Knoppers embo Newsletter Issue 24 (Summer 2013). Retrieved 9 March 2014 http://www.embo.org/news/emboencounters/issue-24/the-limits-of-privacy.
M. Stulic“Genetic Non Discrimination, Privacy and Property Rights”Murdoch University Electronic Journal of Law7 (2000) 2. Retrieved 9 March 2014 http://worldlii.austlii.edu.au/au/journals/MurUEJL/2000/19.html.