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. (shrink)

In this issue of Journal of Medical Ethics, Pugh1 offers a pluralist justice-based argument in support of the spirit, if not the precise letter, of the UK approach to the use of genetic test results to underwrite life insurance. We agree with Dr Pugh’s general contention that there is ethical and philosophical support for curtailment of insurers’ access to, and use of, applicants’ GTR in underwriting. However, we disagree with the contention that broad revisionary implications of certain theories of (...) justice render them unpersuasive. In fact, despite the competing theories, the United Nations Universal Declaration on the Human Genome and Human Rights has already made a clear statement on this issue. Article 6 of the Declaration,2 unanimously adopted in 1997 by 77 countries, along with a resolution for its implementation,3 states, ‘No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity.’ Further, Article 25 of the UN Convention on the Rights of Persons with Disabilities prohibits discrimination against persons with disabilities in the provision of life insurance. These statements are not contingent on the acceptability of the degree of revisionary implications. They are clear, unambiguous statements about the obligations of signatory countries. Despite this, few countries have taken steps commensurate with this expectation, possibly due to the scale of changes required for proper ratification. However, genetic discrimination is recognised as one …. (shrink)

Current research on the human genome holds enormous long-term promise for improvements in health care, but it poses an immediate ethical challenge in the area of health insurance, by raising the question of whether insurers should be allowed to take genetic information about customers into account in the setting of premiums. It is widely held that such discrimination is immoral and ought to be illegal, and the prevalence of this view is understandable, given the widespread belief, which I (...) endorse, that every individual in a society as affluent as ours has a basic right to affordable health care. But prohibiting genetic discrimination in health insurance is not an effective way to protect this right. On the contrary, I argue that because of the nature of insurance as a product sold in a competitive market, such a prohibition is misguided, and its worthy aims must, instead, be pursued through reforms in our country’s system of publicly provided health care. (shrink)

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. (shrink)

The science and technology of genetic testing is rapidly advancing with the consequences that genetic testing may well offer the prospect of being able to detect the onset of future disabilities. Some recent research also indicates that certain behavioural profiles may have a strong genetic basis, such as the determination to succeed and win or the propensity for risk-taking, which may be of interest to third parties. However, as this technology becomes more prevalent there is a danger (...) that the genetic information may be misused by entities such as employers, insurance companies, educational facilities, and finance companies and that people with particular genetic profiles may be discriminated against.This book explores the different types and the potential uses of genetic testing. The book highlights the ethical and legal dilemmas and the challenges arising as a result of emerging and rapidly advancing genetic science. Chapters in the book assess the importance and impact of the US Genetic Information Non-Discrimination Act (GINA) in the employment and health insurance contexts asking whether it is proving to be an effective tool in addressing the issue of genetic discrimination and alleviating individuals' fears of discrimination. The book then goes on to make the case for regulation at the European Union level in order to protect the privacy of genetic information and to prevent the discriminatory use of genetic information in Europe. It considers what can be learnt from the experience of the US in addressing ethical and legal issues as well as the impact that the UN Convention on the Rights of Persons with Disabilities is having on this debate within the EU. (shrink)

With advances in genetic technology, there are increasing concerns about the way in which genetic information may be abused, particularly in people at increased genetic risk of developing certain disorders. In a recent case in Hong Kong, the court ruled that it was unlawful for the civil service to discriminate in employment, for the sake of public safety, against people with a family history of mental illness. The plaintiffs showed no signs of any mental health problems and (...) no genetic testing was performed. This was the first case concerning genetic discrimination in common law jurisdictions, therefore the court's judgment has implications for how genetic discrimination cases may be considered in the future. The court considered it inappropriate to apply population statistics or lifetime risks to individuals while examining fitness for work. It recommended an individualised assessment of specific risks within the job, relative to other risks posed by that workplace. (shrink)

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. (shrink)

The first of three commentaries on “A Defense of Genetic Discrimination,” from the July‐August 2013 issue.

According to US law, insurance companies can lawfully differentiate individual health insurance premiums on the basis of non-genetic medical information, but not on the basis of genetic information. The article reviews the case for such genetic exceptionalism. First, I critically assess some standard justifications. Next, I scrutinize an argument appealing to the view that genetically based premium differentiation expresses that persons do not all merit equal concern and respect. In the final section, I argue that even if (...) genetic exceptionalism is unjustified, there is a forceful luck egalitarian argument against basing premiums on genetic risks, to wit, that this tends to make some individuals worse off than others as a result of the bad brute luck involved in having a genetically determined, above-average risk of developing health problems. (shrink)

In the recent past a number of empirical studies provided evidence that increasing genetic knowledge leads to new forms of exclusion, disadvantage and stigmatisation. As a consequence, many states have inaugurated special legislation to fight "genetic discrimination".This article focuses on some theoretical, normative and practical problems in the scientific and political debate on genetic discrimination. It puts forward the thesis that the existing antidiscrimination approach is based on the implicit idea that genes are the essence (...) of (human) life. Since genes are held responsible for individual development and personal identity, genetic discrimination is granted a privileged legal status in comparison to other forms of discrimination. As a result the analytical and political concentration on processes of genetic discrimination may reinforce the "geneticization" of body, illness and deviance. (shrink)

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. (shrink)

The issue of genetic discrimination has attracted growing attention and has been the focus of a recent major Australian inquiry. It is, however, a complex and loaded notion, open to interpretation. This paper explores the concept of genetic discrimination in both its theoretical and practical dimensions. It examines its conceptual underpinnings, how it is understood, and how this understanding fits within the legal framework of disability discrimination. The paper also examines the phenomenon in practice, including (...) the ‘fear factor’ and the resulting implications for the development of regulatory policy. The paper argues that we need to be discerning in our interpretation of this term, and differentiate between discriminatory conduct which is legal and illegal. Further, it is argued that a concerted societal response to the ‘problem’ of genetic discrimination is needed involving targeted legal reforms as well as broader non-legal strategies. (shrink)

The issue of genetic discrimination has attracted growing attention and has been the focus of a recent major Australian inquiry. It is, however, a complex and loaded notion, open to interpretation. This paper explores the concept of genetic discrimination in both its theoretical and practical dimensions. It examines its conceptual underpinnings, how it is understood, and how this understanding fits within the legal framework of disability discrimination. The paper also examines the phenomenon in practice, including (...) the ‘fear factor’ and the resulting implications for the development of regulatory policy. The paper argues that we need to be discerning in our interpretation of this term, and differentiate between discriminatory conduct which is legal and illegal. Further, it is argued that a concerted societal response to the ‘problem’ of genetic discrimination is needed involving targeted legal reforms as well as broader non-legal strategies. (shrink)

The United States’ Genetic Information Nondiscrimination Act of 2008 was sweeping legislation intended to protect the privacy of genetic information and prevent discrimination based on genetic factors in health insurance and employment. It protects the genetic privacy of individuals in these contexts and limits the likelihood that genetic discrimination will occur. However, in the case of employment, it does so at the cost of safety, both to the individuals it is meant to protect (...) and to others. On occasion, adherence to the dictates of GINA could lead to serious and avoidable harm to many people. Odd as it may seem, then, there can be such a thing as justified genetic discrimination. There are times when knowledge of genetic factors and subsequent action overrides reasons against obtaining or using such information. Moreover, this knowledge can be obtained without violating one's genetic privacyx. (shrink)

This paper outlines a major empirical study that is being undertaken by an interdisciplinary team into genetic discrimination in Australia. The three-year study will examine the nature and extent of this newly emerging phenomenon across the perspectives of consumers, third parties and the legal system, and will analyse its social and legal dimensions. Although the project is confined to Australia, it is expected that the outcomes will have significance for the wider research community as this is the most (...) substantial study of its kind to be undertaken to date into genetic discrimination. (shrink)

The potential power of predictive genetic testing as a risk regulator is impressive. By identifying asymptomatic individuals who are at risk of becoming ill, predictive genetic testing may enable those individuals to take prophylactic measures. As new therapies become available, the usefulness of genetic testing undoubtedly will increase. Further, when a person's family medical history indicates a propensity towards a particular genetic disease, a negative test result may open up otherwise denied opportunities by showing that this (...) person has not inherited suspect genes. In the latter type of case, a negative test result may reassure the individual that pursuing a particular course of action is worthwhile, or may convince prospective employers that the individual will be a serviceable employee. (shrink)

The potential power of predictive genetic testing as a risk regulator is impressive. By identifying asymptomatic individuals who are at risk of becoming ill, predictive genetic testing may enable those individuals to take prophylactic measures. As new therapies become available, the usefulness of genetic testing undoubtedly will increase. Further, when a person's family medical history indicates a propensity towards a particular genetic disease, a negative test result may open up otherwise denied opportunities by showing that this (...) person has not inherited suspect genes. In the latter type of case, a negative test result may reassure the individual that pursuing a particular course of action is worthwhile, or may convince prospective employers that the individual will be a serviceable employee. (shrink)

Background. As the development and use of genetic tests have increased, so have concerns regarding the uses of genetic information. Genetic discrimination, the differential treatment of individuals based on real or perceived differences in their genomes, is a recently described form of discrimination. The range and significance of experiences associated with this form of discrimination are not yet well known and are investigated in this study. Methods. Individuals at-risk to develop a genetic condition (...) and parents of children with specific genetic conditions were surveyed by questionnaire for reports of genetic discrimination. A total of 27,790 questionnaires were sent out by mail. Of 917 responses received, 206 were followed up with telephone interviews. The responses were analyzed regarding circumstances of the alleged discrimination, the institutions involved, issues relating to the redress of grievances, and strategies to avoid discrimination. (shrink)

The Genetic Information Nondiscrimination Act of 2008 was passed to encourage patients to seek genetic testing that could improve health outcomes and provide opportunities for preventive measures. GINA protects individuals from discrimination based upon genetic information, but not upon manifested diseases and conditions. Because the manifestation of a disease establishes a threshold of protection for individuals under GINA, the definition of manifestation is crucial to understanding the scope of the bill. This paper examines the range of (...) possible legal definitions of disease manifestation and explores the historical struggle that courts have faced when trying to apply these different definitions. Specifically, the paper examines three frameworks that courts have used in the past to interpret the manifestation of a disease; “manifestation as apparent symptoms,”“manifestation as patient action,” and “manifestation as physician action.” We argue that the “manifestation as physician action” is the best framework to utilize in this law generally, but that the definition of manifestation should be read in the light most favorable to a plaintiff in order to achieve the underlying goals of GINA. (shrink)

Congress passed the Genetic Information Nondiscrimination Act of 2008 in order to remove a perceived barrier to clinical genetic testing. By banning health insurance companies and employers from discriminating against an individual based on his or her genetic information, legislators hoped that patients would be encouraged to seek genetic testing that could improve health outcomes and provide opportunities for preventive measures. Their explicit legislative goal was to fully protect the public from discrimination and allay their (...) concerns about the potential for discrimination, thereby allowing individuals to take advantage of genetic testing, technologies, research, and new therapies.However, GINA left a number of issues unresolved, most notably failing to define the concept of disease manifestation. GINA was structured such that it only provides protection against misuse of genetic information up until the point when an individual's disease has manifested. It protects an individual with a genetic predisposition for a disease, but not an individual actively suffering from that disease. (shrink)

Whole–exome sequencing (WES) has increased our ability to analyze large parts of the human genome, bringing with it a plethora of ethical, legal, and social implications. A topic dominating discussion of WES is identification of “secondary findings” (SFs), defined as the identification of risk in an asymptomatic individual unrelated to the indication for the test. SFs can have considerable psychosocial impact on patients and families, and patients with an SF may have concerns regarding genomic privacy and genetic discrimination. (...) The Genetic Information Nondiscrimination Act of 2008 (GINA) currently excludes protections for members of the military. This may cause concern in military members and families regarding genetic discrimination when considering genetic testing. In this report, we discuss a case involving a patient and family in which a secondary finding was discovered by WES. The family members have careers in the U.S. military, and a risk–predisposing condition could negatively affect employment. While beneficial medical management changes were made, the information placed exceptional stress on the family, who were forced to navigate career–sensitive “extra–medical” issues, to consider the impacts of uncovering risk–predisposition, and to manage the privacy of their genetic information. We highlight how information obtained from WES may collide with these issues and emphasize the importance of genetic counseling for anyone undergoing WES. (shrink)

Over the past 20 years, a series of empirical studies in different countries have shown that the increase in genetic knowledge is leading to new forms of exclusion, disadvantaging and stigmatisation. The term "genetic discrimination" has been coined to refer to a (negative) differential treatment of an individual on the basis of what is known or assumed about his or her genetic makeup. Reported incidents2 include difficulties in finding or retaining employment, problems with insurance policies and (...) difficulties with adoption.So far, no empirical data on genetic discrimination in Germany are available. For this reason it remains unclear how often people in Germany are discriminated against because of their genetic characteristics. Aside from individual cases do forms of systematic genetic discrimination exist? If so, in which institutions and social arenas do they appear? These questions cannot be answered at present even cursorily, since no specialised studies or basic surveys have been carried out. Even the ethical, legal, and social issues (ELSI) accompanying the Human Genome Project3 and financed by the German Federal Ministry for Education and Research does not include a single investigation of this. (shrink)

This paper utilizes Iris Marion Young’s critical, post-9/11 reading of Thomas Hobbes, as a theorist of authoritarian government grounded in fear of threat (Young 2003). Applying Young’s reading of Hobbes to the high-profile ethicist Julian Savulescu’s advocacy of genetic enhancement reveals an underlying unjust discrimination in Savulescu’s use of patriarchal protector–protected analogies between family and state. First, the paper shows how Savulescu’s concept of procreative beneficence, in which parents use genetic selection to have children who will have (...) the best lives possible, is unjustly discriminatory against marginalized groups. Increasingly, however, he has invoked public security to justify genetic interventions. In recent speeches, Savulescu has argued a global state of emergency is developing due to a combination of the global environmental crisis, the threat of bioterrorism, and the failure of liberalism. To help deal with this emerging state of emergency, Savulescu advocates an unjustly discriminatory array of genetic-based governance practices, including detention and segregation. (shrink)

During the 1920s and 1930s geneticist L. C. Dunn of Columbia University cautioned Americans against endorsing eugenic policies and called attention to eugenicists' less than rigorous practices. Then, from the mid-1940s to early 1950s he attacked scientific racism and Nazi Rassenhygiene by co-authoring Heredity, Race and Society with Theodosius Dobzhansky and collaborating with members of UNESCO on their international campaign against racism. Even though shaking the foundations of scientific discrimination was Dunn's primary concern during the interwar and post-World War (...) II years, his campaigns had ancillary consequences for the discipline. He contributed to the professionalization of genetics during the 1920s and 1930s and sought respectability for human genetics in the 1940s and 1950s. My article aims to elucidate the activist scientist's role in undermining scientific discrimination by exploring aspects of Dunn's scientific work and political activism from the 1920s to 1950s. Definitions are provided for scientific discrimination and activist scientist. (shrink)

Genetic testing can not only provide information about diseases but also their prevalence in ethnic, gender, or other vulnerable populations. While offering the promise of significant therapeutic benefits and serving to highlight our commonality, genetic information also raises a number of sensitive human rights issues touching on identity and the perception thereof, as well as the possibility of discrimination and social stigma. It stands to reason that the results of individual screenings could haplessly be used to make (...) general assumptions about entire ethnic or gender groups. In this manner, genetic information can directly influence identity by impacting and perhaps even reframing conceptions of group rights and dimensions of self-identification, thus importing constitutional scrutiny on questions of dignity and discrimination in particular. Is there a risk of collective stigmatization deriving from discrete testing of self-identified individuals? Would such stigmatization impinge on individual dignity by the exogenous imposition of ethnic or gender/sexual identity? If so, what norms can most adequately respond if and when individual and group interests diverge? These questions are examined from a comparative perspective. (shrink)

In the paper ‘Genetic information, insurance, and a pluralistic approach to justice’, Jonathan Pugh1 develops an argument from unresolved pluralism in our theories of justice, via the pluralism this occasions in relation to the specific question of the use of genetic test results in insurance underwriting, to the conclusion that the UK regulatory approach in relation to the use of GTRs in insurance is broadly correct.1 Pugh’s argument is wide-ranging and I cannot provide a complete critique of it (...) in this short comment, but I will gesture towards some strands of the argument that are potentially problematic. The first potential problem in the argument is that Pugh bases his argument on a very extensive range of accounts of justice, including pure maximising consequentialism, strict egalitarianism and libertarianism, among many others. If these are all accounts of justice, it is not strange that there is pluralism of conclusions in relation to a specific question of justice or discrimination, such as the use of GTRs in the underwriting of specific kinds of insurance contracts. Pugh’s range, for instance, includes accounts of justice that deny the direct importance of distributive concerns as well as accounts that see distributive concerns as crucial. These accounts disagree not only about the answer to Pugh’s question but also about …. (shrink)

This paper considers the legal position of genetic test results in insurance law in England and Wales. The strict position is that this information is material to the decision of the insurer to offer insurance cover and should be disclosed by insurance applicants. However, the British Government and the Association of British Insurers have agreed to a moratorium on the use of genetic test results in insurance, which will run until 2014. The moratorium prohibits unfavourable treatment of insurance (...) clients on their basis of their genetics, unless it can be justified. In this paper, I consider the notion of genetic discrimination and ask whether it is possible to justify the concept in such a way that its existence should be accepted. The paper suggests that the insurance industry and the general public have different viewpoints on the concept of discrimination, and that this causes much of the disagreement over the issue of using genetic test results in insurance. (shrink)

“Privacy considerations no longer arise out of particular individual problems; rather, they express conflicts affecting everyone.”Along with the promise of assuaging the scourge of disease, the so-called genetic revolution unquestioningly imports a slew of thorny human rights issues that touch on matters such as dignity, disclosure, and the subject of this article – genetic testing and the social stigma potentially deriving therefrom.It is now rather evident that certain otherwise therapeutically promising forms of research can inadvertently involve social risks (...) exceeding the individual preoccupations of eclectic study participants. With that as the case, the following proposes to examine the peculiar stigma attached to genetic information and its potential human rights implications extending beyond the insurance and employment context. In so doing, it raises the intersection of interests between self-identified members of historically vulnerable groups and the group itself, which the law seems to take for granted in the genetics context. (shrink)

This article considers the future of genetic testing and disiblity insurance, and explores the potential for discrimination when using genetic information.

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 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. (shrink)

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 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. (shrink)

As we enter the new century, humanity wields increasing power to understand, alter, and control the world in which we live. The mysteries of our genetic code provide remarkable new insights into our unique human characteristics. Rapid developments in information technology provide instant access to limitless data. The information age has taken hold, and the genetic revolution is in full swing. With apologies to Aldous Huxley, we stand at the precipice of a brave new world.It has been just (...) 50 years since James Watson and Francis Crick's groundbreaking discovery of the double helix. Since then, profound developments in the science of genetics have been staggering. More staggering still are the potential benefits, the boundless horizons, the promised and unimagined applications of their work, and the work of the many scientists involved in the sequencing of the human genome. There can be no doubt that a firm and unwavering commitment to the betterment of humankind has fueled this tireless effort. (shrink)

‘Ideologies of Discrimination’ considers the implications of the new genetics for understandings of personhood and for understandings of the relationship between people in groups. In particular, the essay delineates and examines the emerging notion of a ‘genetic group’ and considers the social implications of redefining families, racial groups and ethnic groups through express, and often exclusive, reference to a shared genome. One consequence of such redefinition has been the justification and elaboration of stigmatizing images of and discrimination (...) against such groups—especially those, such as Jews and African-Americans, that have long been identified with specific somatic characteristics. A few worrisome trends begin to emerge in the response of the American legal system to the notion of genetic groups. Among these is a shift in the locus of privacy and identity from the autonomous individual to the genetic group. This shift challenges long-standing Western values that depend upon the ideological centrality of autonomous individuality. (shrink)

'Ideologies of Discrimination' considers the implications of the new genetics for understandings of personhood and for understandings of the relationship between people in groups. In particular, the essay delineates and examines the emerging notion of a 'genetic group' and considers the social implications of redefining families, racial groups and ethnic groups through express, and often exclusive, reference to a shared genome. One consequence of such redefinition has been the justification and elaboration of stigmatizing images of and discrimination (...) against such groups-especially those, such as Jews and African-Americans, that have long been identified with specific somatic characteristics. A few worrisome trends begin to emerge in the response of the American legal system to the notion of genetic groups. Among these is a shift in the locus of privacy and identity from the autonomous individual to the genetic group. This shift challenges (and threatens) long-standing Western values (including equality and liberty) that depend upon the ideological centrality of autonomous individuality. (shrink)