Genetic Testing and the Future of Disability Insurance: Ethics, Law and Policy
Susan M. Wolf
University of Minnesota Law School
Jeffrey P. Kahn
Johns Hopkins Berman Institute of Bioethics
Journal of Law, Medicine and Ethics, Vol. 35, No. 2, 2007
Predictive genetic testing poses a fundamental challenge to insurance, by identifying and attaching probabilities to health risks, sometimes long before they eventuate in symptoms. This has made insurer access to and use of genetic information highly controversial, as insurers may seek to penalize those with genetic vulnerabilities using a range of underwriting and pricing practices. Though a substantial literature analyzes these problems in the context of health insurance, there is almost no literature on the use of genetics in disability insurance. Yet disability insurance is a crucial protection against loss of income due to disability. And qualifying for disability insurance may be difficult or impossible for an individual whose genetics predict future disability. Indeed, a genetic variant predicting future disability may itself be regarded by an insurer as form of disability, a “molecular disability.”
This 11-article symposium is the first major collection of papers on genetic testing and disability insurance. These articles result from a 2-year NIH-funded project (grant #1-R01-HG02089) on “Genetics & Disability Insurance: Ethics, Law & Policy” (Jeffrey Kahn, Principal Investigator; Co-Investigators: Susan M. Wolf and Diane Bartels). This grant was awarded to complete a comprehensive investigation of the ethical, legal, and policy issues in the use of genetic information in private and public disability insurance and to recommend policies based on the findings.
The centerpiece of this symposium is an article offering an extended analysis of the role of genetic testing in both private disability insurance (individual and group) and public disability insurance (including Workers’ Compensation, SSI, and SSDI). (Susan M. Wolf & Jeffrey P. Kahn, with input from the Working Group on Genetic Testing and Disability Insurance, Genetic Testing and the Future of Disability Insurance: Ethics, Law and Policy, 35 J.L. MED. ETHICS 6 (2007).) This article uncovers previously unidentified use of genetics in disability insurance disputes. It goes on the offer normative recommendations on proper and improper uses of genetics in the primary forms of disability insurance. Additional articles ground their analyses in disability theory, the debate over genetic exceptionalism, and detailed examination of the workings of private and public insurance.
Number of Pages in PDF File: 2
Keywords: genetics, genetic testing, disability insurance, disability, health insurance, life insurance, health law, law and genetics, genetic exceptionalism, bioethics, employment discrimination, SSI, SSDI, Workers’ Compensation
Date posted: January 5, 2011
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