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.

Protecting Genetic Privacy by Permitting Employer Access Only to Job-Related Employee Medical Information: Analysis of a Unique Minnesota Law

1998 ◽  
Vol 24 (4) ◽  
pp. 399-416
Author(s):  
Mark A. Rothstein ◽  
Betsy D. Gelb ◽  
Steven G. Craig
Keyword(s):  
Health Insurance ◽  
Human Genome ◽  
Human Genome Project ◽  
Action Plan ◽  
Genetic Discrimination ◽  
Genome Project ◽  
Social Implications ◽  
Committee Report ◽  
Discrimination In Employment ◽  
The Human Genome Project

One of the most frequently expressed concerns about new scientific discoveries resulting from the Human Genome Project is the potential for genetic discrimination in insurance and employment. The issue of discrimination in insurance, primarily health insurance, has justifiably received widespread attention in the scholarly literature. Among other research, there has been a special task force on insurance of the Joint Working Group on Ethical, Legal, and Social Implications of the Human Genome Project, a special committee report of the National Action Plan on Breast Cancer, a special report of the American Council of Life Insurance and the Health Insurance Association of America and numerous reports and scholarly articles.The ethical, legal and social implications of genetic discrimination in employment, although widely recognized as being very important, have received somewhat less attention than genetic discrimination in health insurance. Undoubtedly, much of the concern about genetic discrimination in employment arises from the relationship between employment and group health insurance. However, there are other problems. The disclosure of sensitive genetic information may result in invasions of privacy and breaches of confidentiality in obtaining the information and the loss of employment means denial of the opportunity to earn a livelihood for individuals determined to be at genetic risk. As a result, many at-risk individuals forego genetic testing because they fear these consequences.

The Genetic Privacy Act: An Analysis of Privacy and Research Concerns

1997 ◽  
Vol 25 (4) ◽  
pp. 256-272 ◽  
Author(s):  
Edwin S. Flores Troy
Keyword(s):  
Human Genome ◽  
Health Care Professionals ◽  
Human Genome Project ◽  
Genetic Information ◽  
Medical Information ◽  
Genetic Material ◽  
Genome Project ◽  
Genetic Privacy ◽  
Privacy Act ◽  
The Human Genome Project

In the last few years, a great deal of attention has been paid to the effects that the achievements of the Human Genome Project will have on the confidentiality of medical information. The Genetic Privacy Act (GPA) is an attempt to address the privacy, confidentiality, and property rights relating to obtaining, requesting, using, storing, and disposing of genetic material. The GPA grew out of concerns over the vast amount of genetic information that is a product of the Human Genome Project. The central goals of the GPA are twofold: (1) to define an individual's right to control access to their genetic material and the privilege to control the information derived therefrom; and (2) to prevent potential and actual abuse of genetic information by third parties, such as insurance companies, employers, and government. The GPA is one of a group of proposals that seek to control the flow of medical information from the individual to health care professionals and to other persons.

scholarly journals Genetic discrimination: emerging ethical challenges in the context of advancing technology

2019 ◽  
Author(s):  
Carolyn Riley Chapman ◽  
Kripa Sanjay Mehta ◽  
Brendan Parent ◽  
Arthur L Caplan
Keyword(s):  
Health Insurance ◽  
Genetic Testing ◽  
Genetic Information ◽  
Predictive Power ◽  
The United States ◽  
Legal Framework ◽  
Genetic Discrimination ◽  
Ethical Challenges ◽  
Health Related ◽  
Discrimination In Employment

Abstract Genetic testing is becoming more widespread, and its capabilities and predictive power are growing. In this paper, we evaluate the ethical justifications for and strength of the US legal framework that aims to protect patients, research participants, and consumers from genetic discrimination in employment and health insurance settings in the context of advancing genetic technology. The Genetic Information Nondiscrimination Act (GINA) and other laws prohibit genetic and other health-related discrimination in the United States, but these laws have significant limitations, and some provisions are under threat. If accuracy and predictive power increase, specific instances of use of genetic information by employers may indeed become ethically justifiable; however, any changes to laws would need to be adopted cautiously, if at all, given that people have consented to genetic testing with the expectation that there would be no genetic discrimination in employment or health insurance settings. However, if our society values access to healthcare for both the healthy and the sick, we should uphold strict and broad prohibitions against genetic and health-related discrimination in the context of health insurance, including employer-based health insurance. This is an extremely important but often overlooked consideration in the current US debate on healthcare.

scholarly journals Genetic Discrimination in the Workplace

1998 ◽  
Vol 26 (3) ◽  
pp. 189-197 ◽  
Author(s):  
Paul Steven Miller
Keyword(s):  
Genetic Information ◽  
Medical Information ◽  
Genetic Research ◽  
Early Death ◽  
Genome Project ◽  
Insurance Companies ◽  
Carrier Status ◽  
Genetic Tests ◽  
Increased Risk ◽  
The Human Genome Project

The surge in genetic research and technology, fuelled in large part by the Human Genome Project, has resulted in the continuing expansion of the range of genetic tests and other genetic information available to physicians, insurance companies, employers, and the general public.’ Genetic tests can provide presymptomatic medical information about an individual, including information about an individual's increased risk of future disease, disability, or early death. These tests can reveal information about an individual's carrier status, that is, the likelihood of parents passing on to their children a genetic condition, and about the health of the individual's family members. Although genetic information provides the promise of early detection and treatment of certain illnesses and disorders, it also poses risks. As a result of the increase in genetic testing and information, legal issues regarding employment discrimination on the basis of genetic information are emerging.

An Analysis of Genetic Discrimination Legislation Proposed by the 105th Congress

1998 ◽  
Vol 24 (4) ◽  
pp. 443-480
Author(s):  
Jeremy A. Colby
Keyword(s):  
Human Genome ◽  
Charles Dickens ◽  
Genetic Disease ◽  
Human Genome Project ◽  
Genetic Information ◽  
Genetic Discrimination ◽  
Genome Project ◽  
Molecular Medicine ◽  
Genetic Codes ◽  
The Human Genome Project

It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness … it was the spring of hope, it was the winter of despair … we were all going direct to Heaven, we were all going direct the other way.—Charles DickensThe Human Genome Project (HGP) provides information about the human genome that will forever alter society and the way we view ourselves. The genetic age offers great potential, including a future where gene and germ-cell therapy may virtually eliminate genetic disease. However, genetic information may also result in a world characterized by genetic discrimination and genetic determinism. Although genetic information will be used to develop revolutionary treatments, such as gene therapy and other molecular medicine, it will also bring genetic discrimination and heretofore unrealized invasions into the privacy of our genetic codes.

Efforts to Regulate the Collection and Use of Genetic Information

1999 ◽  
Vol 123 (11) ◽  
pp. 1066-1070
Author(s):  
Philip R. Reilly
Keyword(s):  
Genetic Information ◽  
Medical Information ◽  
Genomic Research ◽  
Genetic Privacy ◽  
State Laws ◽  
Privacy Law ◽  
Archived Samples ◽  
Community Consent ◽  
Genetic Medicine

Abstract Public fascination with and support for genetic medicine is complicated by a deeply held fear that genetic information will be used by third parties (eg, insurers, employers, school systems) in ways that will harm the individuals from whom it was derived. Since the mid-1990s there has been much state and some federal legislative activity to address 2 closely related issues: the maintenance of genetic privacy and the prevention of genetic discrimination. These laws have had to confront several challenging questions such as what constitutes a genetic test, is genetic information qualitatively different from other medical information, and is there a means to distinguish between the two. In general the state laws are not well crafted. I will argue that a far more preferable policy is to draft a global, comprehensive medical records privacy law and to develop a model statute that defines the role of predictive genetic information in insurance underwriting. Concerns over misuse of genetic information also pose major issues for the conduct of genomic research. Among those I discuss are ownership of the DNA sample, significant changes in the scope of consent that must precede the decision to volunteer as a subject in genomic research, the reuse of long-archived samples, the challenges to intellectual property rights that flow from research, and the rise of the doctrine of community consent.

Faith meets the Human Genome Project: religious factors in the public response to genetics

1999 ◽  
Vol 8 (3) ◽  
pp. 207-214 ◽  
Author(s):  
R. Cole-Turner
Keyword(s):  
Genetic Information ◽  
Genome Project ◽  
Religious Community ◽  
Genetic Privacy ◽  
Public Response ◽  
The Public ◽  
Religious People ◽  
Divine Freedom ◽  
The Human Genome Project ◽  
Symptomatic Diagnosis

Providers of genetic services need to be broadly aware of the role that religious beliefs can play in the public's understanding of genetic information and of the choices that are posed. This paper identifies three religious themes that tend to arise when religious people, especially Christians, are involved in genetic testing and pre-symptomatic diagnosis. The first theme of fate and freedom leads to the prediction that religious people will be less likely than others to ascribe fatalistic or deterministic powers to genes but will want to maintain room for human and divine freedom, and that perhaps they will err too much in this direction. The second theme, having to do with religious community, suggests that religious people will experience a tension between the need for genetic privacy and the desire to share personal concerns with their faith community. Third, religious people regard the unborn with respect, even if not all regard the fetus as a person. Those who accept abortion for genetic reasons are likely to grieve the loss and to look for rituals to mark the value of the life that was not continued.

The Human Genome Project and public policy

1999 ◽  
Vol 8 (3) ◽  
pp. 161-168 ◽  
Author(s):  
Glen A. Evans
Keyword(s):  
Human Genome ◽  
Human Genome Project ◽  
Social Issues ◽  
Genome Project ◽  
Biological Information ◽  
Biological Research ◽  
Genetic Privacy ◽  
Emerging Issues ◽  
The Many ◽  
The Human Genome Project

The Human Genome Project is a massive government and privately funded undertaking to sequence the entire human genome and discover all 80,000 human genes in less than 15 years. As the project nears completion in the first decade of the 21st century, the ramifications of public availability of this vast amount of biological information are likely to pervade society. The legal, ethical and social issues raised by the genome project and associated biological research are expected to have a profound and long lasting impact on daily life. How society deals with the many emerging issues involving genetic privacy, designer babies, and the transformation of medical care among others will be a major focus of public and governmental discussion in the next decade.

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.

Genomics, Insurance and Human Rights: Is there a Place for Regulatory Frameworks in Africa?

2006 ◽  
Vol 2 (1) ◽  
pp. 20-34
Author(s):  
Vincent O. Nmehielle
Keyword(s):  
Human Rights ◽  
Health Insurance ◽  
Genetic Information ◽  
Insurance Industry ◽  
Genetic Discrimination ◽  
Insurance Companies ◽  
Genetic Profile ◽  
Regulatory Frameworks ◽  
Health Care Context ◽  
Insurance Decisions

AbstractThis article examines the human rights dimension of genetic discrimination in Africa, exploring the place of regulatory frameworks while taking into account the disadvantaged position of the average African. This is in response to the tendency of insurance companies toward making health insurance decisions on the basis of individual genetic information, which could result in genetic discrimination or health insurance discrimination based on a person's genetic profile. The author considers such questions as the intersection between human rights (right to life, health, privacy, human dignity and against genetic discrimination) in relation to the insurance industry, as well as the obligations of state and non-state actors to promote, respect, and protect the enjoyment of these rights. The article argues that African nations should not stand aloof in trying to balance the competing interests (scientific, economic and social) presented by the use of genetic information in the health care context and that ultimately it is the responsibility of states to develop domestic policies to protect their most vulnerable citizens and to prevent entrenched private discrimination based on an individual's genes.

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