Genetic Testing and the Future of Disability Insurance: Ethics, Law & Policy

Posted: 13 Dec 2010 Last revised: 6 Feb 2014

See all articles by Susan M. Wolf

Susan M. Wolf

University of Minnesota Law School

Jeffrey P. Kahn

Johns Hopkins Berman Institute of Bioethics

Date Written: June 1, 2007

Abstract

Predictive genetic testing poses a fundamental challenge for insurance, by revealing a probability (that can reach certainty) of future disease and disability. This has produced a substantial literature on the proper role of genetic testing in health insurance, as well as state statutes and federal law limiting insurers’ use of genetic testing. Yet analysis of the proper role of genetic testing in disability insurance is nearly nonexistent and both state and federal law have failed to face the attendant issues. This is an enormous oversight, as disability insurance funds basic needs when a disabling condition prevents income from work. This article, from a two-year project (funded by National Institutes of Health (NIH), National Human Genome Research Institute (NHGRI) grant #1-R01-HG02089), presents the first in-depth analysis of the challenging issues: Should disability insurerance be permitted to consider genetics and exclude predicted disability? May disabilities with a recognized genetic basis be excluded from coverage as pre-existing conditions? How should private insurers writing individual and group policies, employers, and public insurers deal with predictive genetic testing?

Disability insurance is a complex set of products and programs spanning employment-based group and individual insurance, individually purchased private insurance, Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI), and Workers’ Compensation. Analysis of reported SSDI, SSI, and Workers’ Comp cases show genetics already in play. This article is the first comprehensive analysis of how genetics is surfacing in reported disability insurance disputes across the range of programs. The article also offers the first normative discussion of how genetics should figure in the range of disability insurance products and programs in use. This analysis grapples with the role of disability insurance, the implications of employer funding, and the definition of disability in the face of the reality that we all carry multiple deleterious genes.

Keywords: Insurance, disability insurance, genetics, genetic testing, predictive genetics, genetic discrimination, employment discrimination, Social Security Disability Insurance, Supplemental Security Income, Workers’ Compensation, Americans with Disabilities Act, disability

Suggested Citation

Wolf, Susan M. and Kahn, Jeffrey P., Genetic Testing and the Future of Disability Insurance: Ethics, Law & Policy (June 1, 2007). Journal of Law, Medicine and Ethics, Vol. 35, No. 2, pp. 6-32, 2007. Available at SSRN: https://ssrn.com/abstract=1724756

Susan M. Wolf (Contact Author)

University of Minnesota Law School ( email )

229 19th Avenue South
Minneapolis, MN 55455
United States
612-625-3406 (Phone)
612-624-9143 (Fax)

HOME PAGE: http://www.law.umn.edu/facultyprofiles/wolfs.html

Jeffrey P. Kahn

Johns Hopkins Berman Institute of Bioethics ( email )

1809 Ashland Ave
Baltimore, MD 21205
United States
410-614-5679 (Phone)

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