Hostname: page-component-586b7cd67f-l7hp2 Total loading time: 0 Render date: 2024-11-30T17:10:25.620Z Has data issue: false hasContentIssue false

Reaching Empowerment in Genetic Information Regulation in Israel and Germany

Published online by Cambridge University Press:  01 July 2009

Liza Ireni-Saban*
Affiliation:
Lauder School of Government, Diplomacy and Strategy Interdisciplinary Center (IDC).Herzliya E-mail: [email protected]

Abstract

This paper explores the challenges for policy makers with respect to the appropriate balance needed between relevant interests, such as private sector organisations, and individuals and communities who share their genetic information. The paper focuses on empowerment as a key strategic concept to which policy instruments purport to advance. The paper offers three frames of references that foster empowerment on personal and community levels, including privacy protection, avoidance of discrimination, and research profits and benefits sharing. Drawing on these themes of empowerment, this article critically compares policy instruments relating to genetic information in Germany and Israel.

Type
Articles
Copyright
Copyright © Cambridge University Press 2009

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Alper, J. S., Geller, L. N., Barash, C. I., Billings, P. R., Laden, V. and Natowica, M. R. (1994), ‘Genetic discrimination and screening for hemochromatosis’, Journal of Public Health Policy, 15, 3, 345–58.Google Scholar
Anderlik, M. R. and Rothstein, M. A. (2001), ‘Privacy and confidentiality of genetic information: what rules for the new science?’, Annual Review of Genomics and Human Genetics, 2, 401–33.CrossRefGoogle ScholarPubMed
Bemelmans-Videc, M.-L. (1998), ‘Introduction: policy instrument choice and evaluation’, in Bemelmans-Videc, M.-L., Rist, R. and Vedung, E., Carrots, Sticks and Sermons: Policy Instruments and Their Evaluation, New Brunswick: Transaction, pp. 118.Google Scholar
Beskow, L. M., Burke, W., Merz, J. F., Barr, P. A., Terry, S., Penchaszadeh, V. B., Gostin, L. O., Gwinn, M. and Khoury, M. J. (2001), ‘Informed consent for population-based research involving genetics’, Journal of American Medical Association, 286, 2315–21.CrossRefGoogle ScholarPubMed
Billings, P., Kohn, M. A., de Cuevas, M., Beckwith, J., Alper, J. S. and Natowicz, M. R. (1992), ‘Discrimination as a consequence of genetic testing’, American Journal of Human Genetics, 50, 476–82.Google ScholarPubMed
Bodenhorn, N. and Lawson, G. (2003), ‘Genetic counseling: implications for community counselors’, Journal of Counseling and Development, 2, 120.Google Scholar
Burgermeister, J. (2003), ‘Teacher was refused job because relatives have Huntington's disease’, British Medical Journal, 327, 827.Google Scholar
Cohen, E. S. (2001), ‘Globalization and the boundaries of the state: a framework analyzing the changing practice of sovereignty’, Governance, 14, 1, 7597.Google Scholar
Daugbjerg, C. (1998), ‘Explaining policy outcomes: integrating the policy network approach with macro-level and micro-level analysis’, in Marsh, D., Comparing Policy Networks, Buckingham: Open University Press.Google Scholar
Derfner, L. (1996), ‘Blood stains: Ethiopian leaders cry “cover-up” as government’, Jewish Week, 2 August.Google Scholar
Doern, G. B. and Phidd, R. W. (1992), Canadian Public Policy: Ideas, Structure, Process, 2nd edn, Toronto: Nelson.Google Scholar
Gerards, H. G. and Janssen, H. L. (2006), ‘Regulation of genetic and other health information in a comparative perspective’, European Journal of Health Law, 13, 339–98.CrossRefGoogle Scholar
Godard, B. et al. (2003), ‘Genetic information and testing in insurance and employment: technical, social and ethical issues’, European Journal of Human Genetics, 11, 123–42.CrossRefGoogle ScholarPubMed
Gollust, S. E., Apse, K., Fuller, B. P., Miler, P. S. and Biesecker, B. B. (2005), ‘Community involvement in developing policies for genetic testing: assessing the interests and experiences of individuals affected by genetic conditions’, American Journal of Public Health, 95, 1, 3541.Google Scholar
Gottweis, H. (2005), ‘Governing genomics in the 21st century: between risk and uncertainty’, New Genetics and Society, 24, 175–94.CrossRefGoogle ScholarPubMed
Hall, M. A. and Rich, S. S. (2000), ‘Laws restricting health insurers’ use of genetic information: impact on genetic discrimination’, American Journal of Human Genetics, 66, 293307.CrossRefGoogle ScholarPubMed
Hazan, R. and Maor, M. (eds.) (2000), Parties, Elections and Cleavages: Israel in Comparative and Theoretical Perspective, London: Frank Cass.Google Scholar
Hodge, J. G. and Harris, M. E. (2001), ‘International genetics research and issue privacy’, Journal of Biolaw and Business (special supplement), 15–21.Google Scholar
Hood, C. (1986), The Tools of Government, Chatham: Chatham House.Google Scholar
Howlett, M. (1991), ‘Policy instruments, policy styles and policy implementation: national approaches to theories of instrument choice’, Policy Studies Journal, 19, 2, 121.CrossRefGoogle Scholar
Howlett, M. (2005), ‘What is a policy instrument? Policy tools, policy mixes and policy implementation styles’, in Eliadis, P., Hill, M. and Howlett, M.. (eds.), Designing Government: From Instruments to Governance, Montreal: McGill-Queen's University Press, pp. 3150.CrossRefGoogle Scholar
Howlett, M. and Ramesh, M. (1993), ‘Patterns of policy instrument choice: policy styles, policy learning and the privatization experience’, Policy Studies Review 12, 1/2, 324.Google Scholar
Howlett, M. et al. (eds.) (2005), Designing Government: From Instruments to Governance, Montreal: McGill-Queen's University Press.Google Scholar
Hubbard, R. and Wald, E. (1999), Exploding the Gene Myth: How Genetic Information Is Produced and Manipulated by Scientists, Physicians, Employers, Insurance Companies, Educators, and Law Enforcers, Boston: Beacon Press.Google Scholar
HUGO Ethics Committee (2000), ‘Genetic Benefit Sharing’ Science 290, 5489, Statement on Benefit-Sharing. London: Human Genome Organisation, http://www.gene.vcl.ac.uk/hugo/benefit.html (accessed 4.3.2007).CrossRefGoogle Scholar
Ireni-Saban, Liza (2008), ‘Clinical and genetic trials: regulation and legislation’, in ‘Accelerating Medical Solutions in Israel: Building a Global Life Sciences Industry’, Financial Innovations Lab Report, The Milken Institute (submitted to President Peres ‘Tomorrow’ conference in May 2008.Google Scholar
Issa, A. M. (2002), ‘Ethical perspectives on pharmacogenomic profiling in the drug development process’, Nature Reviews, 1, 300–8.Google ScholarPubMed
Kirschen, E. S. et al. (1964), Economic Policy in Our Time, Amsterdam: Elsevier.Google Scholar
Lemke, T. (2005), ‘Beyond genetic discrimination: problems and perspectives of a contested notion’, Genomics, Society and Policy, 1, 2240.CrossRefGoogle Scholar
Lemmens, T. (1999), ‘Private parties, public policy?’, in Tompson, A. K. and Chadwick, R. F.. (eds), Genetic Information, New York: Klewer Academic Publishers, pp. 3140.CrossRefGoogle Scholar
Linder, S. H. and Peters, B. G. (1989), ‘Instruments of governments: perception and context’, Journal of Public Policy 9, 1, 3558.CrossRefGoogle Scholar
Mannion, G. (2006), ‘Genetics and the ethics of community’, Heythrop Journal, 47, 226–56.CrossRefGoogle Scholar
McDonnell, L. M. and Elmore, R. F. (1987), Alternative Policy Instruments, Santa Monica: Center for Policy Research in Education.Google Scholar
Murray, W. D., Wimbush, J. C. and Dalton, D. R. (2001), ‘Genetic screening in the workplace: legislative and ethical implications’,Journal of Business Ethics, 29, 365–78.Google Scholar
Natowicz, M. R., Alper, J. K. and Alper, J. S. (1992), ‘Genetic discrimination and the law’, American Journal of Human Genetics, 50, 465–75.Google ScholarPubMed
Pierre, J. B. and Guy, P. (2000), Governance, Politics and the State, Basingstoke: Palgrave.Google Scholar
Prainsack, Barbara (2007), ‘Natural forces: the regulation of genomics in Israel’, in Glasner, Paul, Atkinson, Peter and Greenslade, Helen (eds), New Genetics, New Social Formations, London: Routledge.Google Scholar
Reches, A. (2002), ‘Recommendation and guidelines in large population-based research report’, Chamber of Ethics, 8, 145.Google Scholar
Rist, R. C. (1998), ‘Choosing the right policy instrument at the right time: the con-textual challenges of selection and implementation’, in Bemelmans-Videc, M.-L., Rist, R. and Vedung, E., Carrots, Sticks and Sermons: Policy Instruments and Their Evaluation, New Brunswick: Transaction Publishers.Google Scholar
Rochefort, D. and Cobb, R. W. (1994), ‘Problem definition: an emerging perspective’, in Rochefort, D. and Cobb, R. W.. (eds), The Politics of Problem Definition: Shaping the Policy Agenda, Lawrence, KS: University Press of Kansas, pp. 131.Google Scholar
Rouvroy, A. (2008), Human Genes and Neoliberal Governance: A Foucauldian Critique, London and New York: Routledge-Cavendish.Google Scholar
Salamon, L. M. (2002), ‘The new governance and the tools of public action: an introduction’, in Salamon, Lester M. and Elliott, Odus V. (eds), The Tools of Government: A Guide to the New Governance, New York: Oxford University Press, pp. 147.Google Scholar
Salamon, L. M. and Lund, M. S. (1989), ‘The tools approach: basic analysis’, in M Salamon, L. (ed), Beyond Privatization: The Tools of Government Action, Washington, DC: The Urban Institute Press.Google Scholar
Schneider, Anne L. and Ingram, H. (1997), Policy Design for Democracy, Lawrence: University of Kansas Press.Google Scholar
Simon, Jürgen et al. (2007), ‘A legal framework for biobanking: the German experience’, European Journal of Human Genetics, 15, 528–32.CrossRefGoogle ScholarPubMed
Stavins, R. N. (1990), ‘Innovative policies for sustainable development: the role of economic incentives for environmental protection’, Harvard Public Policy Review, Cambridge, MA.Google Scholar
Stavins, R. N. and Grumbly, T. (1993), ‘The greening of the market: making the polluter pay’, in Marshall, W. and Schram, M. (eds), Mandate for Change, New York: Berkley Books.Google Scholar
Sterner, T. (2003), Policy Instruments for Environmental and Natural Resource Management, Washington, DC: RFF Press.Google Scholar
Suter, S. M. (2001), ‘The allure and peril of genetics exceptionalism: do we need special genetics legislation?’, Washington University Law: Quarterly, 79, 669751.Google ScholarPubMed
Vedung, E. (1998), ‘Policy instruments: typologies and theories’, in Bemelmans-Videc, M.-L., Rist, R. and Vedung, E., Carrots, Sticks and Sermons: Policy Instruments and Their Evaluation, New Brunswick: Transaction, pp. 2158.Google Scholar
Wadman, M. (1998), ‘Jewish leaders meet NIH chiefs on genetic stigmatization fears’, Nature, 392, 851.CrossRefGoogle ScholarPubMed
Wallerstein, N. (1992), ‘Powerlessness, empowerment, and health: implications for health promotion programs’, American Journal of Health Promotion, 6, 197205.Google Scholar