Regulating Genetic Information—Exploring the Options in Legal Theory

in European Journal of Health Law
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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.

Regulating Genetic Information—Exploring the Options in Legal Theory

in European Journal of Health Law

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References

4

M. A. Hamburg and F. S. Collins“The Path to Personalized Medicine”New England Journal of Medicine 363 (4) (2010) 301.

10

L. O. Gostin and J. G. Hodge Jr.“Genetic Privacy and the Law: An End to Genetics Exceptionalism”Jurimetrics Journal 40(21) (1999) 31.

12

S. Suter“The Allure and Peril of Genetic Exceptionalism: Do we need Genetic Specific Legislation?”Washington University Law Quarterly 79(3) (2001) 669 706.

13

Annassupra note 8 p. 11. He does however clarify that “it is coded and probabilistic: we are not necessarily going to get every disease that we are genetically predisposed to develop.”

15

L. O. Gostin“Genetic Discrimination: The Use of Genetically Based Diagnostic and Prognostic Tests by Employers and Insurers”American Journal of Law and Medicine 17 (1 & 2) (1991) 109 111.

16

J. L. Dolgin“Personhood, Discrimination and the New Genetics”Brook Law Review 66 (2000-2001) 755 786-787.

17

L. P. Francis“You are Born with your Genes: Justice and Protection against Discrimination in the Use of Genetic Information”Mount Sinai Journal of Medicine 77(2) (2010) 188 190.

20

S. Soina“Genetic Testing legislation in Western Europe—a fluctuating regulatory target”Journal of Community Genetics 3 (2012) 143. See also O. Varga et al. “Definitions of genetic testing in European legal documents” Journal of Community Genetics 3 (2012) 125.

21

J. H. Gerards and H. L. Janssen“Regulation of Genetic and Other Health Information in a Comparative Context”European Journal of Health Law 13 (2006) 339346-347.

22

M. A. Rothstein“Genetic Exceptionalism and Legislative Pragmatism”Hastings Center ReportNo 4 (2005) 27 at 29.

25

T. Lemmens“Selective Justice, Genetic Discrimination and Insurance: Should we Single out Genes in our Laws?”McGill Law Journal 45 (2000) 347349.

30

A. KaczorowskaEuropean Union Law (2nd edn, New York: Routledge2011) p. 90. See also L. Senden Soft Law in European Community Law (Portland or : Hart Publishing 2004).

31

F. Snyder“The Effectiveness of European Community Law: Institutions, Processes, Tools and Techniques”The Modern Law Review 56(1) (1993) 19 35.

33

L. Selden“Soft Law, Self-Regulation and Co-Regulation in European Law—Where do they meet?”Electronic Journal of Comparative Law 9 (1) (2005). Retrieved 9 March 2014 http://www.ejcl.org/91/art91-3.html.

35

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.

36

T. McGleenan and U. Wiesling“Insurance and Genetics: European Policy Options”European Journal of Health Law 7 (2000) 367372.

58

J. Roberts“The Genetic Information Nondiscrimination Act as an Antidiscrimination Law”Notre Dame Law Review 86 (2) (2011) 597 617.

59

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.

63

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.

64

G. Laurie“The Most Personal Information of All: An Appraisal of Genetic Privacy in the Shadow of the Human Genome Project”International Journal of Law Policy and Family 10 (1996) 74-101.

65

G. LaurieGenetic Privacy: A Challenge to Medico—Legal Norms (Cambridge: Cambridge University Press2002) p. 6.

73

S. Suter“Disentangling Privacy from Property: Toward a Deeper Understanding of Genetic Privacy”The George Washington Law Review 72 (2003-2004) 737 770.

79

R. A. Spinello“Property rights in genetic information”Ethics and Technology 6 (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.

84

J. PennerThe Idea of Property in Law (Oxford: Oxford University Press1997) p. 1.

87

C. M. Valerio Barrad“Genetic Information and Property Theory”Northeastern University Law Review 87 (3) (1992-1993) 1037 1049.

95

M. Yesley“Protecting Genetic Difference”Berkeley Technology Law Journal 13 (1998) 653664.

100

For further discussion see E. R. Gold“Body Parts: Property rights and the ownership of Human Biological Materials”Harvard Journal of Law and Technology 10 (2) (1997) 369.

101

D. B. Resnik“The Commercialization of Human Stem Cells: Ethical and Policy Issues”Health Care Analysis 10 (2002) 127140.

106

L. Oystein Ursin“Privacy and Property in the Biobank Context”Healthcare Ethics Committee Forum 22 (2010) 211221.

108

M. Stulic“Genetic Non Discrimination, Privacy and Property Rights”Murdoch University Electronic Journal of Law 7 (2000) 2. Retrieved 9 March 2014 http://worldlii.austlii.edu.au/au/journals/MurUEJL/2000/19.html.

115

B. H. Hall“Patents and Patent Policy”Oxford Review of Economic Policy (2007) 1. See also R. Feldman Rethinking Patent Law (Cambridge ma : Harvard University Press 2012).

122

P. T. Kim“Genetic Discrimination, Genetic Privacy: Rethinking Employee Protections for a Brave New Workplace”Northwestern University Law Review 96 (2002) 14971498.

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