Genetic Privacy Laws and Patients' Fear of Discrimination by Health Insurers: The View from Genetic Counselors

2000 ◽  
Vol 28 (3) ◽  
pp. 245-257 ◽  
Author(s):  
Mark A. Hall ◽  
Stephen S. Rich
Keyword(s):  
Health Insurance ◽  
Genetic Information ◽  
Federal Law ◽  
Genetic Privacy ◽  
Genetic Tests ◽  
Group Health ◽  
Privacy Laws ◽  
Similar Legislation ◽  
Do So ◽  
Health Insurers

Since 1991, over half the states have enacted laws that restrict or prohibit insurers’ use of genetic information in pricing, issuing, or structuring health insurance. Wisconsin was the first state to do so, in 1991, followed by Ohio in 1993, California and Colorado in 1994, and then several more states a year in each of the next five years. Similar legislation has been pending in Congress for several years. Also, a 1996 federal law known as the Health Insurance Portability and Accountability Act (HIPAA) prohibits group health insurers from applying “preexisting condition” exclusions to genetic conditions that are indicated solely by genetic tests and not by any actual symptoms.

Beyond “Genetic Discrimination”: Toward the Broader Harm of Geneticism

1995 ◽  
Vol 23 (4) ◽  
pp. 345-353 ◽  
Author(s):  
Susan M. Wolf
Keyword(s):  
Health Insurance ◽  
Genetic Information ◽  
Genetic Discrimination ◽  
Genetic Knowledge ◽  
Analytic Framework ◽  
Genetic Tests ◽  
Race And Gender ◽  
And Gender ◽  
Almost All ◽  
As If

The current explosion of genetic knowledge and the rapid proliferation of genetic tests has rightly provoked concern that we are approaching a future in which people will be labeled and disadvantaged based on genetic information. Indeed, some have already suffered harm, including denial of health insurance. This concern has prompted an outpouring of analysis. Yet almost all of it approaches the problem of genetic disadvantage under the rubric of “genetic discrimination.”This rubric is woefully inadequate to the task at hand. It ignores years of commentary on race and gender demonstrating the limits of antidiscrimination analysis as an analytic framework and corrective tool. Too much discussion of genetic disadvantage proceeds as if scholars of race and gender had not spent decades critiquing and developing antidiscrimination theory.Indeed, there are multiple links among race, gender, and genetics. Dorothy Roberts has discussed the historical links between racism and genetics, while she and others have begun to map connections between gender and genetics.

Genetic Exceptionalism and Legislative Pragmatism

2007 ◽  
Vol 35 (S2) ◽  
pp. 59-65 ◽  
Author(s):  
Mark A. Rothstein
Keyword(s):  
Health Insurance ◽  
Genetic Information ◽  
Medical Information ◽  
Genetic Discrimination ◽  
Genome Project ◽  
Genetic Privacy ◽  
State Laws ◽  
Genetic Exceptionalism ◽  
Discrimination In Employment ◽  
The Human Genome Project

One of the most important and contentious policy issues surrounding genetics is whether genetic information should be treated separately from other medical information. The view that genetics raises distinct issues is what Thomas Murray labeled “genetic exceptionalism,” borrowing from the earlier term “HIV exceptional-ism.” The issue of whether the use of genetic information should be addressed separately from other health information is not merely an academic concern, however. Since the Human Genome Project began in 1990, nearly every state has enacted legislation prohibiting genetic discrimination in health insurance; two-thirds of the states have enacted laws prohibiting genetic discrimination in employment, and other state laws have been enacted dealing with genetic discrimination in life insurance, genetic privacy, and genetic testing. Bills in Congress also would prohibit genetic discrimination in health insurance and employment.

scholarly journals Life, Health, and Disability Insurance: Understanding the Relationships

2007 ◽  
Vol 35 (S2) ◽  
pp. 80-89 ◽  
Author(s):  
Robert H. Jerry
Keyword(s):  
Health Insurance ◽  
Life Insurance ◽  
Genetic Information ◽  
Disability Insurance ◽  
State Laws ◽  
The Public ◽  
Health Insurers

This project focuses on the extent to which disability insurers should be allowed to use genetic information in underwriting and rate-setting, but this subject cannot be completely isolated from the related questions of whether life and health insurers should also have this discretion. Federal and state laws place significant restrictions on insurers’ use of genetic information in health insurance, but regulation of such use in life and disability insurance is considerably more modest. This essay examines the reasons for this disparity and discusses the implications for future proposals to regulate disability insurers’ use of genetic information in underwriting and rate-setting. The thesis is relatively simple: Communitarian values are stronger in health insurance than in life and disability insurance. Accordingly, the public is likely to acquiesce to insurers’ insistence that they be allowed to make distinctions among insureds in disability insurance (and life insurance) that would not be tolerated in health insurance.

scholarly journals The law of genetic privacy: applications, implications, and limitations

2019 ◽  
Vol 6 (1) ◽  
pp. 1-36 ◽  
Author(s):  
Ellen Wright Clayton ◽  
Barbara J Evans ◽  
James W Hazel ◽  
Mark A Rothstein
Keyword(s):  
Health Insurance ◽  
Genetic Testing ◽  
Genetic Information ◽  
Genetic Data ◽  
Genetic Privacy ◽  
Legal Principles ◽  
Trade Offs ◽  
The Law ◽  
The Many ◽  
Challenging Question

Abstract Recent advances in technology have significantly improved the accuracy of genetic testing and analysis, and substantially reduced its cost, resulting in a dramatic increase in the amount of genetic information generated, analysed, shared, and stored by diverse individuals and entities. Given the diversity of actors and their interests, coupled with the wide variety of ways genetic data are held, it has been difficult to develop broadly applicable legal principles for genetic privacy. This article examines the current landscape of genetic privacy to identify the roles that the law does or should play, with a focus on federal statutes and regulations, including the Health Insurance Portability and Accountability Act (HIPAA) and the Genetic Information Nondiscrimination Act (GINA). After considering the many contexts in which issues of genetic privacy arise, the article concludes that few, if any, applicable legal doctrines or enactments provide adequate protection or meaningful control to individuals over disclosures that may affect them. The article describes why it may be time to shift attention from attempting to control access to genetic information to considering the more challenging question of how these data can be used and under what conditions, explicitly addressing trade-offs between individual and social goods in numerous applications.

Genetic privacy, discrimination, and the U.S. Congress

1999 ◽  
Vol 8 (3) ◽  
pp. 215-222 ◽  
Author(s):  
Mark S. Frankel
Keyword(s):  
Health Insurance ◽  
Public Sector ◽  
Genetic Information ◽  
Public Debate ◽  
Policy Agenda ◽  
Genetic Privacy ◽  
Genetics Research ◽  
Private And Public ◽  
Insurance Decisions ◽  
The U.S

Advances in genetics research have fueled public debate over the use of genetic information about individuals and families by health insurers. Fears of discrimination based on one's genetic inheritance have prompted various private and public sector groups to press for restrictions on access to and use of genetic information in health insurance decisions. As a result, the U.S. Congress has considered several pieces of legislation that would impose such restrictions. This paper discusses the merging of several factors that are responsible for placing and maintaining this issue on the congressional policy agenda.

Israeli Nurses and Genetic Information Disclosure

2007 ◽  
Vol 14 (3) ◽  
pp. 280-294 ◽  
Author(s):  
Sivia Barnoy ◽  
Nili Tabak
Keyword(s):  
At Risk ◽  
Genetic Information ◽  
Information Disclosure ◽  
Family Members ◽  
Genetic Counselors ◽  
Genetic Tests ◽  
Positive Results ◽  
Do So

The debate continues about whether people have a duty to pass on the positive results of their genetic tests to relatives who are at risk from the same disease, and, should they refuse, whether physicians and genetic counselors then have the duty to do so. To date, the role and views of nurses in this debate have not been investigated. In our study, a sample of Israeli nurses, untrained in genetics, were asked for their theoretical opinions and what practical steps they would take in the case of patients' refusal to disclose. The nurses were very sure that patients should inform their families but were equally sure that nurses must respect their decision to disclose or not. Few said they would take practical steps to disclose information if the patient objected. The authors believe that the most useful and appropriate role for nurses in this field is in working to bring about co-operation between patients and family members.

scholarly journals Trends over time in enrollment in non-group health insurance plans by tobacco use in the United States

2017 ◽  
Vol 7 ◽  
pp. 46-49 ◽  
Author(s):  
Michael F. Pesko ◽  
Johanna Catherine Maclean ◽  
Cameron M. Kaplan ◽  
Steven C. Hill
Keyword(s):  
United States ◽  
Health Insurance ◽  
Tobacco Use ◽  
The United States ◽  
Group Health ◽  
Trends Over Time ◽  
Group Health Insurance ◽  
Over Time

Laboratory Specimens and Genetic Privacy: Evolution of Legal Theory

2013 ◽  
Vol 41 (S1) ◽  
pp. 65-68 ◽  
Author(s):  
Michelle Huckaby Lewis
Keyword(s):  
Biomedical Research ◽  
Biological Samples ◽  
Biological Tissue ◽  
Genetic Information ◽  
Legal Theory ◽  
Genetic Privacy ◽  
Tissue Samples

Human biological tissue samples are an invaluable resource for biomedical research designed to find causes of diseases and their treatments. Controversy has arisen, however, when research has been conducted with laboratory specimens either without the consent of the source of the specimen or when the research conducted with the specimen has expanded beyond the scope of the original consent agreement. Moreover, disputes have arisen regarding which party, the researcher or the source of the specimen, has control over who may use the specimens and for what purposes. The purposes of this article are: (1) to summarize the most important litigation regarding the use of laboratory specimens, and (2) to demonstrate how legal theory regarding control of laboratory specimens has evolved from arguments based upon property interests in biological samples to claims that the origins of laboratory specimens have privacy interests in their genetic information that should be protected.

Sign in / Sign up

Export Citation Format

Share Document