scholarly journals The Genetic Information Nondiscrimination Act of 2008

2008 ◽  
Vol 3 (4) ◽  
pp. 33-46 ◽  
Author(s):  
Carrie G. Donald ◽  
Adam K. Sanders

This article argues that GINA theoretically protects people from genetic discrimination in insurance coverage and in employment; however, its true legacy will be assuring the American public that taking genetic tests will not invite sanctions from either insurance providers or employers.

1995 ◽  
Vol 23 (4) ◽  
pp. 345-353 ◽  
Author(s):  
Susan M. Wolf

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.


2000 ◽  
Vol 28 (3) ◽  
pp. 245-257 ◽  
Author(s):  
Mark A. Hall ◽  
Stephen S. Rich

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.


Author(s):  
Carolyn Riley Chapman ◽  
Kripa Sanjay Mehta ◽  
Brendan Parent ◽  
Arthur L Caplan

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.


Author(s):  
Andy Miah

AbstractThis paper examines the UK regulatory framework and the ethical arguments surrounding the use of genetic tests, specifically considering how they would apply to selecting for enhanced health characteristics. It discusses the Human Genetic Commission reports on the use of genetic information more broadly, identifying the implied values and concerns arising from their conclusions. It argues that the HGC conflates the concepts of ‘best’ and ‘enhancement’ and this limits the persuasiveness of their moral stance


2006 ◽  
Vol 2 (1) ◽  
pp. 20-34
Author(s):  
Vincent O. Nmehielle

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.


2004 ◽  
Vol 11 (4) ◽  
pp. 365-380
Author(s):  

AbstractAdvances in genetic science are increasing the significance of genetic information within the contractual environment. While there may be an obligation upon governments to respond to this trend a number of problems may be associable with any attempt to do so that is centred on the concept of genetic discrimination as such. An attempt to exclusively limit regulatory reform to the acquisition and use of specifically genetic information may prove ultimately indefensible: the nature of genetic information is likely to render any such reform either ineffective or unworkable in practice or prove it arbitrary in principle.This position may be defended through a sustained look at what might conceivably be understood by the term 'genetic discrimination'. The term may, broadly speaking, be understood to refer to one of three kinds of discrimination. Tracing the conceptual contours of genetic discrimination in a primary, secondary and tertiary sense helps to illustrate potential regulatory difficulties of both principle and practice.If the identified practical problems are to be avoided then lines must be drawn not between the three 'kinds' of genetic discrimination described but rather through them. However, drawing a line through a particular concept of genetic discrimination (and of genetic information) involves undeniably excluding certain genetic information from the scope of the regulation.If an unblinking focus upon the concept of genetic information per se demonstrates the limits of this concept as a focus of legislative reform then questions are raised as to the significance of 'genetic' interpretation to the raison d'être of regulation. I conclude by proposing that, while advances in genetic science may provide the motivation, the most appropriate target of reform may not indeed be genetic information per se at all.


2013 ◽  
Vol 16 (2) ◽  
pp. S53-S71 ◽  
Author(s):  
Don S. Kenkel ◽  
Hua Wang

Abstract Personalized prevention uses family history and predictive genetic testing to identify people at high risk of serious diseases. The availability of predictive genetic tests is a newer and still-developing phenomenon. Many observers see tremendous potential for personalized prevention to improve public health. At the same time, the emergence of these new markets raises familiar health policy concerns about costs, cost-effectiveness, and health disparities. This paper first discusses an economic framework for the analysis of personalized prevention. On the demand side, consumers use personalized prevention as a form of information that allows them to make better choices about prevention, including medical care and health behaviors like diet and exercise. On the supply side, an interplay of complex market forces and regulations will determine the prices, advertising, and insurance coverage of predictive genetic tests. Beyond the question of whether health insurance will cover the costs of predictive genetic tests, there is a great deal of concern about whether consumers’ use of genetic tests might place them at risk of genetic discrimination or might lead to adverse selection. The paper also reports descriptive analysis of data from the 2000, 2005, and 2010 National Health Interview Surveys on the use of predictive genetic tests. The empirical analysis documents large socioeconomic status-related disparities in consumers having heard of genetic tests: for example, consumers with less schooling, Blacks, and Hispanics were substantially less likely to have heard of genetic tests. Evidence from other empirical studies provides little evidence that genetic testing leads to genetic discrimination in insurance markets. There is more evidence suggesting adverse selection, where genetic testing leads consumers to purchase long-term care insurance. The paper concludes with some preliminary thoughts about important directions for future research. The goal of the paper is to review relevant research to help develop an economic approach and social science research agenda into the determinants and consequences of genetic tests for prevention.


2019 ◽  
Vol 2 (2) ◽  
pp. 94-96
Author(s):  
Yann Joly ◽  
Gratien Dalpé ◽  
Miriam Pinkesz

In this commentary, we critically review the Quebec Court of Appeal’s reference decision to the effect that the Genetic Non-Discrimination Act (GNDA) is unconstitutional. In sum, the court held that the federal government exceeded its criminal law power through the GNDA, as the Act did not have a valid criminal law purpose. The decision was met with opposition, as advocacy groups for Canadians suffering from genetic diseases or genetic predispositions viewed the GNDA as a step in the right direction and were hopeful that it would offer protection from genetic discrimination. In closing, we argue that the consequences of the Court of Appeal’s opinion will be less dire than anticipated by some advocacy groups. In fact, we suggest that this decision brings about a unique opportunity for progress, where stakeholders can engage the public and policymakers in a forward- looking debate on the use of genetic information.


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