About | HeinOnline Law Journal Library | HeinOnline Law Journal Library | HeinOnline

22 DePaul J. Health Care L. 1 (2021)

handle is hein.journals/dephcl22 and id is 1 raw text is: The Problems with Patchwork:
State Approaches to Regulating Insurer Use of Genetic Information
Jarrod O. Anderson', Anna C.F. Lewis2, Anya E.R. Prince
The growing availability of genetic testing in the clinical, research, and direct-to-consumer
realms has caused people to fear that they will be discriminated against for their genes. In response,
Congress passed the Genetic Information Nondiscrimination Act (GINA), which prohibits the use
of genetic information in much of health insurance and employment. Importantly, this prohibition
does not apply to life, long-term care, and disability insurance. While these lines of insurance are
not federally prohibited from using an individual's genetic information, several states do regulate
use of genetic information in these insurance lines. This paper presents a comprehensive 50-state
survey on regulation of how life, long-term care, and disability insurers can use genetic
information. Overall, it shows that the use of genetic information in these lines of insurance is still
relatively unregulated and that the divergent strategies adopted across states are both weak and
problematic. Consistent and even regulation, whether from the federal government or through
model legislation, is needed to adequately protect insurers and families alike.
1 Juris Doctor, University of Iowa College of Law.
2 Research Associate, E.J. Safra Center for Ethics, Harvard University.
3 Associate Professor, University of Iowa College of Law. Research reported in this publication was supported by
the National Human Genome Research Institute of the National Institutes of Health under Award Number
ROOHG008819. The content is solely the responsibility of the authors and does not necessarily represent the official
views of the National Institutes of Health. The authors acknowledge the work of the students in Professor Prince's
Fall 2018 Insurance Law course at the University of Iowa College of Law who contributed to the initial locating and
comparing of state statutes and insurance regulations. The students in the insurance law class who contributed to
underlying state data are Jarrod Anderson, Joao Castro, Chandler Elliott-Fehle, Nicci Coulter-Ledbetter, Elizabeth
Davidson, Sarah Haack, Bryn Hedlund, Jung Min Kang, Benjamin Kramer, Libby Martzahn, Maxwell McDaniel,
Bernadette Nelson, Will O'Brien, Olayinka Ope, Famatta Passawe, Matthew Roth, Elizabeth Vandenberg, and Mary
Grace Warren. (Permission was received from all students to share their names in publication.)
1

What Is HeinOnline?

HeinOnline is a subscription-based resource containing thousands of academic and legal journals from inception; complete coverage of government documents such as U.S. Statutes at Large, U.S. Code, Federal Register, Code of Federal Regulations, U.S. Reports, and much more. Documents are image-based, fully searchable PDFs with the authority of print combined with the accessibility of a user-friendly and powerful database. For more information, request a quote or trial for your organization below.



Short-term subscription options include 24 hours, 48 hours, or 1 week to HeinOnline.

Contact us for annual subscription options:

Already a HeinOnline Subscriber?

profiles profiles most