Genetic Discrimination In Insurance Research Articles

Genetic discrimination views in online discussion forums: Perspectives from Canadian forumites.

Recent advancements in genetic technologies have made genetic information increasingly sought out in a wide range of non-therapeutic contexts, which has increased the risk that such information be used to discriminate against individuals. Frequently, it is genetic counselors who have to respond to questions about genetic discrimination (GD) from worried patients. Here, we examine the general Canadian public's knowledge, attitudes, and concerns about GD through a comprehensive analysis and categorization of posts from selected Canadian online discussion forums. Overall, we collected 1,638 posts, from which we coded 694 posts originating from newspaper comment sections and Reddit posts that were categorized to yield 6 main themes that consistently concerned Canadian users on the topics of GD: (a) discussions centered around how insurance business practices can be affected by genetic information; (b) issues in employment; (c) 'fear' of genetic testing and eugenics; (d) preventive approaches such as law and human rights instruments; (e) the predictive value and privacy that should be conferred to genetic information; and (f) other ethical issues. Overall, discussions addressed risk stratification models applied to genetic information and personal insurance underwriting. We find that many forum users (aka forumites) fear GD in insurance and employment, consider genetic information private, and strongly support different legal approaches to prevent GD. However, we find dissension among forumites that may represent different advocacy groups such as insurers and employers. From these important concerns and social conceptions, we discuss issues that should be taken into consideration for the development of future policies and information campaigns addressing GD in Canada and other countries.

Legislative Approaches to Addressing the Issue of Genetic Discrimination in Insurance

Genetic testing is a very attractive source of information for insurers, who often associate this opportunity with improving the risk assessment of personal insurance, as it is a key factor in determining whether insurers are willing to offer coverage to a particular individual and at what price. At the same time, statements are increasingly being made about the possibility of discrimination against policyholders and insured persons due to the expansion of the practice of using such information, which required the adoption of appropriate legislative decisions by a number of countries, although it is too early to talk about the formation of a systematic approach to solving this problem. An analysis of the legislation of a number of states revealed several approaches to solving this problem. The author highlights the countries that have established a complete ban on the use of genetic information in insurance (Austria, Norway, France), including in the context of protecting the rights to protect personal data of third parties (Spain, Portugal), as well as differentiated conditions for the use of genetic data depending on the amounts insurance coverage for life insurance, accident insurance (including at work); on the specific circumstances, determined by the legislator, and the reasons for the genetic study (Switzerland); from the participation of the insured in the program for the detection and prevention of congenital diseases (Israel).

The Economics of Personalization in Prevention and Public Health.

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.

The Paradox of Autonomy: Navigating the Control of Genetic Information

Genetic information is shared in families. This means that family members have the ability to reveal each others genetic information to a varying degree depending on the nature and closeness of the genetic relationship. Consequently, individuals cannot retain both the right to keep their genetic information private and the right to use their own genetic information as they wish. Our constitutional law is largely focused on individuals; this paradox thus sits uneasily in our legal system. Commentary on genetics and law has centered around particular areas where problems arise, or on the general impossibility of complete genetic privacy, without recognizing the overarching paradox posed on the level of individual rights by the shared nature of genetic information. Three particular contexts illustrate the paradox and its usefulness as a tool for evaluating solutions: general privacy claims (including dignitary harms and economic harms stemming from genetic discrimination in insurance and employment); scientific research and clinical settings; and forensic use of genetic information, including familial searching of DNA databases. Though it would be impossible to fully resolve the paradox in any legal regime, greater attention must be paid to the competing values implicated in any rule about genetic information. Recognizing the paradox is a key step in shaping policy to best balance the interests of the individual with the inherently non-individual nature of genetics.

Genetic discrimination in private insurance: global perspectives

In an era of personalized medicine rife with population databases and international consortia, genetic discrimination is once again moving to the forefront of the genetics policy debate. In North America and Europe, many countries have taken a political stance on the use of predictive genetic information by insurers. Asia is also becoming more conscious of the challenge raised by genetic discrimination. In this paper, we present data on the different policy options adopted to resolve the genetic and insurance dilemma in 47 different countries located in four world regions. Approaches varied according to legal traditions, the role insurance plays in each state, and the interplay between private and public health care systems. We conclude that a truly informed international debate on genetic discrimination in insurance should properly account for the limits of genetic predictive information and the social value of health and life insurance as perceived by the public.

Access to health insurance: Experiences and attitudes of those with genetic versus non‐genetic medical conditions

While studies reveal that individuals with both genetic and other chronic medical conditions have difficulty obtaining health insurance, no large-scale studies have compared the health insurance experiences of these groups. The goal of this study was to document and compare the health insurance experiences, attitudes, and beliefs of persons with genetic conditions to those of persons with or at risk for other serious medical conditions. We interviewed approximately 100 adults or parents of children with one of each of the following medical conditions: sickle cell disease (SCD), cystic fibrosis (CF), diabetes, and HIV, and 200 adults with or at risk for breast (BC) or colon cancer (CC). The interview included items related to respondents' experiences and attitudes regarding health insurance. Twenty-seven percent of 597 total respondents self-reported having been denied health insurance or offered insurance at a prohibitive rate. Respondents with single-gene disorders (CF and SCD) were twice as likely to report this as those with non-genetic conditions. Legislation that exists to limit genetic discrimination in insurance addresses genetic risks or traits only, however, rather than protecting those with actual disease. Thus, current legislation may not address the challenges faced by individuals like those in this study, who try to maintain access to health insurance when they or their children are symptomatic with a genetic or other serious health condition. More than one-third of all respondents thought there was a high chance they would be denied health insurance in the future or their insurance would become unaffordable. That individuals with all six health conditions expressed concern regarding their ability to obtain future health insurance suggests policy proposals should be broad-based, addressing the needs and concerns of individuals with diverse health conditions.

Avoiding genetic discrimination in insurance: An exploration of the legality and ethics of precautionary measures in anticipation of unfavourable test outcomes

This paper explores the legality and ethics of an individual securing insurance (life, disability or other forms of income protection insurance for which there is individual risk assessment) in anticipation of undergoing genetic testing. It also seeks to examine the situation from the perspective of genetic counsellors and the extent of their obligations in providing information and advice to individuals contemplating genetic testing. These are matters of importance for health care professionals, human research ethics committees as well, of course, as individuals who may be contemplating undertaking genetic testing.

Genetic Privacy: The Potential for Genetic Discrimination in Insurance

The threat of modern genetics has been perceived as coming, rather dramatically, from genetic engineering, but the less flashy field of medical genetic testing poses significant and immediate issues. This article discusses the potential for breach of confidentiality or invasion of privacy through the acquisition of information, the disclosure of information, and the potential for prejudicial use of that information by third parties. The author concludes that New Zealand's ethical and legal aspects of human genetics needed a review at the time of writing, recommending an advisory group to be set up to monitor developments in human genetics, facilitate discussion with all relevant persons, groups and bodies, and report on issues arising from new developments in human genetics that can be expected to have wider ethical, social, economic, and legal consequences. However, the author does not find it necessary to enact genetic-specific legislation.

Social Implications of Genetic Testing

This paper examines the social implications of predictive genetic testing and its impact on the insurance industry. Although the Human Genome Project has the potential to improve the health of our nation, it also may serve as a means of highlighting genetic differences among individuals and ethnic groups. Thus, if we are to reach the full promise of the Project, society must address the public’s fears of genetic discrimination in insurance and employment contexts. Following an analysis of state and federal legislation on genetic privacy and discrimination, the paper concludes with a challenge to the insurance industry to work with the medical community and health care advocates to formulate a public policy approach that promotes informed consent and the fair use of genetic information.

中國文化視野中遺傳知識的應用

中國文化視野中遺傳知識的應用

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

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.