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Genetic Discrimination: International Perspectives

M. Otlowski,1 S. Taylor,2 and Y. Bombard3,4,
1
Annu. Rev. Genom. Human Genet. 2012.13:433-454. Downloaded from www.annualreviews.org by 115.132.107.185 on 12/02/13. For personal use only.
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Faculty of Law and 2 School of Sociology and Social Work, University of Tasmania, Hobart, Tasmania 7001, Australia; email: margaret.otlowski@utas.edu.au
3 Department of Epidemiology and Public Health, Division of Health Policy and Administration, Yale University, New Haven, Connecticut 06510 4 Department of Epidemiology and Biostatistics, Center for Health Policy and Outcomes, Memorial Sloan-Kettering Cancer Center, New York, NY 10065; email: yvonne.bombard@yale.edu
Annu. Rev. Genomics Hum. Genet. 2012. 13:43354 First published online as a Review in Advance on May 15, 2012 The Annual Review of Genomics and Human Genetics is online at genom.annualreviews.org This articles doi: 10.1146/annurev-genom-090711-163800 Copyright c 2012 by Annual Reviews. All rights reserved 1527-8204/12/0922-0433$20.00
Keywords
stigmatization, impact, responses, strategies, law, policy
Abstract
Genetic discrimination (GD) is a complex, multifaceted ethical, psychosocial, and legal phenomenon. It is dened as the differential treatment of asymptomatic individuals or their relatives on the basis of their real or assumed genetic characteristics. This article presents an overview of GD within the contemporary international context. It describes the concept of GD and its contextual features, reviews research evidence regarding peoples experiences of GD and the impact of GD within a range of domains, and provides an overview of legal and policy responses to GD that have emerged globally. We argue that GD is a signicant and internationally established phenomenon that requires multilevel responses to ensure social justice and equitable outcomes for all citizens. Future research should monitor GD and its impacts within the community as well as institutions and should evaluate the effectiveness of legislative, policy, community education, and systemic responses.
All authors contributed equally.
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CONCEPTS AND CONTEXTS OF GENETIC DISCRIMINATION Genetic Discrimination: The Concept

Genetic discrimination (GD) is a complex, multifaceted, and difcult-to-verify phenomenon that has been described from legal, policy, consumer, ethical, psychosocial, clinical, and public health genetics perspectives (1, 10, 53, 55, 77, 83, 98, 99, 106, 120, 132, 136). It is dened as the differential treatment of asymptomatic individuals or their relatives on the basis of their actual or presumed genetic characteristics (13), and therefore relates to discrimination on the basis of genotype rather than phenotype. Although people might be treated differentially in either positive or negative ways, concerns about GD relate mainly to negative, unfair, or inappropriate treatment (136). Concerns about GD stem partly from deepseated beliefs that it is problematic to discriminate against people on the basis of their unique genetic makeup because such characteristics contribute to their inherent sense of self, identity, and personhood (47, 100, 144). A further aspect of this argument is that such discrimination is inherently unfair, unjust, and socially unacceptable because people have no control over the genetic characteristics they are born with (21, 106, 122, 144). This also relates to the concept of peoples right to genetic privacy, which is based on the assumption that genetic information is substantively different from nongenetic information (genetic essentialism), although this has been contested (6, 106). Notions about genetics and inheritance are underpinned by strongly held, culturally sanctioned beliefs and values about family, race, and ethnicity in Western cultures (144). Genetic testing and family history are two primary mechanisms for establishing the genetic characteristics of asymptomatic people; GD can occur because of inaccurate or incomplete understanding about the nature of the genetic condition in question, its mode of inheritance, and/or its clinical expression. Predictive genetic testing can determine whether an asymptomatic person carries deleterious
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mutations that can predispose him or her to future disease. This testing can indicate whether a person is presymptomatic for a future disease, as in the case of single-gene disorders like Huntington disease, or whether a person has an increased risk of developing a genetic disorder in the future relative to the risk of the general population, as in the case of inherited breast, ovarian, or bowel cancers. Predictive tests therefore provide genetic information about an asymptomatic individuals potential abnormal genotype; it is this information, in the absence of any symptoms of disease, that places a person at risk of GD. Other individuals who are at risk of GD include those identied as carriers of mutations in recessive genes, such as the CFTR gene for cystic brosis; these individuals children may be affected by cystic brosis, but it is unlikely that they will express the disorder themselves (30). Other abnormal genotypes associated with GD relate to fully treatable or preventable genetic conditions like hereditary hemochromatosis (13). Family history also provides genetic information that can place people at risk of GD. Here, assumptions can be made that those with inherited disorders or conditions in their families share the same mutations or risks as their relatives. The emergence of genetic discrimination. Concerns about GD as an emerging social and legal problem were rst expressed in the 1970s, with rapidly advancing developments in human genetics. In 1978, Kenen & Schmidt (70) warned of the dangers of people with sickle cell trait being stigmatized because of their identied genetic status, referring to such individuals as biological and social pioneers (pp. 1117 18). These early concerns were afrmed in 1992 when Billings and associates reported the rst alleged case studies of GD, describing 29 people in Canada and the United States who had experienced negative treatment supposedly because of their genetic characteristics. Billings et al. (13) warned of the potential emergence
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of a new genetic underclass of asymptomatic ill: those who are otherwise healthy but whose genotype is identied as or assumed to be abnormal (p. 479). Since then, concern, debate, and analysis regarding the issue of GD have continued. Concerns about the potential for GD can also be understood with reference to twentiethcentury history and the tragedies associated with early- to mid-twentieth-century eugenics (41, 106). Eugenics is the science of improving the human race by systematically maximizing the inheritance of desirable genes and minimizing the inheritance of deleterious genes (41). In the twentieth century, eugenic science was actively embraced to respond to pressing social problems through racially based programs that included compulsory sterilization of genetically awed individuals. Nazi Germany used a eugenics approach in its mass elimination of people with undesirable genetic characteristics or racial identities, including Jewish and Roma people (14). Controversies in dening genetic discrimination. One ongoing debate about GD has involved its denition. Commentators have argued for the need to differentiate between perceived unfairness and (il)legality and between concepts like discrimination and stigmatization. Negative treatment that is perceived to be unfair may not necessarily be illegal. In Australia, for example, although this policy is frequently experienced as unfair, life insurers are legally permitted to discriminate on the basis of applicants genetic information when determining eligibility and underwriting for life insurance products, provided they can justify decisions on actuarial or other reasonable grounds (6). Discrimination is inextricably linked to other social constructs like stigma and prejudice. Stigma describes the social labeling of individuals or groups as deviant or abnormal, prejudice refers to negative attitudes toward stigmatized people, and discrimination describes inappropriate behavior toward or treatment of them (3, 134). In the context of
GD, individuals with real or presumed genetic differences might experience general stigmatization, prejudice, and/or discrimination in a wide variety of contexts.
Genetic Discrimination in Context

People can experience GD within a range of contexts, from their personal and family relationships to broader societal and public domains. Family, social, and public domains of genetic discrimination. Negative treatment based on genetic information can occur within interpersonal domains, such as family and social settings, as well as within public institutional domains, such as access to fertility and health services, military services, and adoption services. Socially, for example, GD may relate to prejudicial attitudes and negative treatment of at-risk individuals on the basis of their perceived reproductive tness (132). At-risk individuals can also experience stigma, negative attitudes, or discriminatory treatment within their familiesfor example, if they support or refute the benets of undertaking testing (21, 23). Notwithstanding the signicance and potential distress of peoples experiences of GD within family and social domains, the main focus of analysis and discussion regarding GD in the international context has been on insurance and employment because these institutional domains are more amenable to regulation. Insurance. The relationship between insurance and GD has been analyzed from varying perspectives, including legal and policy (17, 68, 85, 98, 108), ethical (122), consumer (21, 82, 86, 115, 131), clinical services (88, 99), and insurance and actuarial (e.g., 48, 127) standpoints. The overarching threads through these perspectives relate to the rights of insurers to have access to family history and genetic test information, insurers use of genetic information to determine insurance eligibility and coverage, the potential reliability of the genetic science that informs
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underwriting determinations, and social justice and fairness concerns. Fear of being unable to access insurance can be a strong disincentive for individuals to undertake genetic testing, thereby potentially excluding them from the health benets of genetic technology (17). Insurance is signicant within contemporary society and provides large-scale social as well as commercial goods (144). Health insurance, for example, underpins systems of health care and service provision (68). For health insurance, risks can be considered on an individual basis, as in the United States, or through a universal, community-rated system where all health risks are distributed across the community, as in Canada, Australia, and Great Britain. Until the 2008 enactment of the US Genetic Information Nondiscrimination Act (GINA), GD was perceived to be a signicant problem in the United States because individuals family histories of inherited disease and genetic test results could be taken into account for health insurance coverage and thus determine their access to health care. (For further discussion of GINA, see Legal and Policy Responses to Genetic Discrimination, below.) GD in the life insurance context has also been widely discussed (108, 144). Issues of concern include full or partial denial of insurance coverage on the basis of an individuals genetic information, limitations or exclusions placed on insurance coverage, increased loadings on insurance premiums, limitations in changes to insurance arrangements, and the possibility of subtle coercion of individuals to undertake testing in order to secure insurance (20, 108, 132). Although usually regarded as a nonessential good provided within the private sphere as a commercial product (68), life insurance and associated products like income protection and disability insurance have high potential psychological and social value for insured individuals and can signicantly inuence their well-being and life chances. This is especially true for self-employed individuals who do not have life insurance, income protection, disability insurance, or compulsory planned savings through their employment (132).
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Debate continues about the rights of life insurers to utilize genetic information when predicting insurance risk. Proponents of justied discrimination by insurers (68) argue that genetic health information is no different from nongenetic health information and should be accessible to insurers as a matter of actuarial fairness, so they are not disadvantaged by adverse selection in predicting insurance risk. Here, the accepted principles of mutuality and acting in utmost good faith require full and honest disclosure by applicants of all relevant health information so that all pooled risks can be protected and contributions can be made proportional to insurance benets (17). For their part, insurers are required to demonstrate rationality in decision making, in that sound actuarial or statistical data have been used to justify underwriting (68, 108). An alternative view is that differential treatment of individuals on the basis of genetic information cannot be fully rational and justied because genetic science continues to evolve and is underdeveloped for risk insurance prediction and underwriting. Proponents of this view argue that this constitutes inherently unfair treatment and the differential valuing of the worth of some individuals compared with others in society (144). Employment. GD in employment has also been extensively discussed. The right to work is considered fundamental in peoples lives and signicantly determines their life chances and outcomes (109). Concerns relate to the relative rights and responsibilities of employers in using peoples genetic information for the purposes of gaining and retaining employment; employers could, for example, require disclosure of genetic information as a precondition for initial employment, continuance of employment, or promotion. Genetic information has potential value to employers in identifying individuals who may be susceptible to specic workplace hazards or who could pose risks if they develop genetic disease in the future, in monitoring workers health if exposure to an industrial hazard occurs, and in maximizing economic benet
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by proactively selecting as healthy a workforce as possible and minimizing costs associated with sick leave, workers compensation, and legal liability for injuries to other workers or the public (109). Opponents argue for the importance of protecting genetic privacy in the workplace, the unfairness of using genetic information for purposes other than health and safety issues relevant to specic workplaces, and the limited validity, reliability, and predictive value of current genetic tests for the purposes of selecting and retaining workers (109). Emerging domains for potential genetic discrimination. To date, GD has been discussed mostly with regard to people at risk of relatively rare genetic disorders and cases where genetic testing is provided through specialized clinical genetics services. However, genetic testing is becoming increasingly integrated into mainstream health care services, where its predictive value can be applied to common diseases like diabetes, obesity, hypertension, coronary artery disease, and inammatory bowel disease (32). These developments increase the potential for GD as many more asymptomatic people can be provided with predictive genetic information, which will have potential implications for insurance, employment, and other social and family relationships. Personalized medicine is another new domain where GD may occur (68). Personalized medicine is dened as the provision of tailored diagnosis, prognosis and treatment efforts based on an individuals genetic composition (29, p. 4). Here, a persons unique prole of health risks and future potential disease is developed through individualized genome testing and tailored therapeutic interventions, including pharmacological treatmentspharmacogenetics. This technology will potentially differentiate between individuals who are likely to benet from treatments and those who may not (29, 32); individuals in the latter category could be treated differentially in health care on the basis of their genetic characteristics as well as in insurance, employment, and other areas (15).
EVIDENCE OF GENETIC DISCRIMINATION

Debate has ensued as to whether the risk of GD has been exaggerated, with critics arguing that it is more a matter of perception and fear than a real phenomenon (57, 58, 101, 121, 141). Objective evidence regarding GD has not been easy to establish for multiple reasons (136), including the need to differentiate between fear of and actual GD, between perceptions and independently veried instances of GD (130), and between discrimination against an asymptomatic person because of genetic factors and discrimination due to other factors (136). Through triangulated approaches and validation studies (9, 20, 21, 23, 38, 114, 132), GD is now an established, incontrovertible ethical, legal, and psychosocial phenomenon.
The Early Evidence

GD was rst described by Billings et al. (13) in a series of case studies depicting negative treatment of people because of their genetic characteristics. Geller (43) subsequently expanded the scope of GD experiences in a case study analysis of 27,790 at-risk individuals and children in the United States, and case studies also began to emerge in other jurisdictions, including Australia (7, 128) and Canada (140). Following these early case studies, surveys began to document the extent of GD. In 1996, Lapham et al. (82) published a survey of disease group members and found that as a result of a genetic disorder, 25% of respondents or affected family members reported being refused life insurance, 22% reported being refused health insurance, and 13% reported being denied or let go from a job. Low et al. (86) compared experiences between samples of individuals with a genetic condition and the general population and found that the former experienced signicantly more GD (33.4% versus 5%, p = 0.01). Of respondents who represented no adverse actuarial risk (noncarriers, carriers of autosomal recessive diseases), 13% also experienced problems with insurance that they believed to be due to their family history.
These results were important in showing that those with genetic diseases in their families were at signicantly higher risk for GD. Finally, these results pointed to the tendency of insurers to misinterpret and misuse genetic information in actuarial assessments. These surveys were the rst of their kind, yet because they included symptomatic respondents, the question of whether they were assessing GD as opposed to disability discrimination represented an important limitation. Apse et al. (2) undertook the rst study that reported perceptions of GD among an asymptomatic sample. Based on a sample at risk of colorectal cancer, 7% reported GD experiences related to premium increases, denial of life and health insurance, difculty in obtaining coverage, or perceived inability to change jobs. However, upon further analysis, the reported experiences of GD were found to be related not to colorectal cancer but rather to other genetic and nongenetic conditions, and included third-hand reports. Kass et al. (69) published the rst study to compare GD experiences among those with genetic and nongenetic conditions (cystic brosis, sickle cell disease, breast/ovarian cancer, colon cancer, diabetes, and HIV/AIDS). Twenty-seven percent of respondents reported being denied insurance or offered it at a prohibitive rate, and those with genetic conditions were two to three times more likely to report GD when obtaining insurance. Kass et al.s sample also consisted of third-hand reports from symptomatic persons. Despite the signicance of these early GD studies, reports were limited to case studies or third-hand reports, and were typically based on the presence of disease in contrast to genetic predisposition (2, 13, 69, 82, 86). Until recently, the prevalence and breadth of GD remained largely undocumented.
Genetic Discrimination: An Internationally Established Phenomenon

The rst national study of the nature and extent of GD emerged from Australia in
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2002 (110, 111) in response to the need for comprehensive, empirical research about the phenomenon across countries where genetic services are highly developed (112, 131). The Australian GD study included clinical genetics clients at risk for a range of conditions, including neurological disorders, familial cancers, and hereditary hemochromatosis. In this study, respondents at risk of neurodegenerative conditions reported more GD than those at risk of familial cancers or hereditary hemochromatosis (65% versus 30% versus 2.5%, respectively) and were signicantly more likely to report GD than those at risk of familial cancers (132). Importantly, the Australian study also veried individuals experiences of GD and analyzed the use of genetic test results in life insurance underwriting in Australia (9, 108). Through interviews, document analysis, and direct contact with the third party involved (with consent), reported incidents of GD were veried in life insurance access, underwriting, and coercion and in applications for workers compensation and early release from prison; in two cases, reported incidents of fear of GD impacting on access to genetic testing were also veried (9). Soon after, North American counterparts to the Australian study emerged within the Huntington disease research communities in Canada and the United States (23, 38), enabling international, cross-cultural comparisons. Through use of a common validated instrument assessing the prevalence of self-reported GD across 23 possible settings, the prevalence of GD was determined to be 10% in Australia, 40% in Canada, and 41% in the United States (23, 38, 132). Prevalence gures likely differ between countries because of the nature of the populations sampled, resulting in differing demographic and genetic testing proles among respondents. Despite these variations, the settings in which GD was most often reported were similarnamely, insurance (26%47%) and family and social (18%44%) settings (Figure 1). In the Canadian study, GD was most often attributed to the family history of individuals at risk of Huntington disease rather than to genetic test results (23), with family
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Figure 1 Experiences of genetic discrimination (GD) reported among the Huntington disease populations across Australia, Canada, and the United States. Data from References 23, 38, and 132.
history being an important predictor of GD experiences: Individuals who learned of their Huntington disease risk at a younger age were more likely to experience GD, as were those who were mutation-positive and highly educated (18). This could be attributed to the mode of inheritance of Huntington disease, its penetrance, and/or the fact that it is a monogenic disorder. Qualitative studies of GD have since also highlighted the subtleties and breadth of GD experiences beyond the insurance and employment domains. For example, subtle yet powerful experiences of disrupted patterns of behavior and interaction within some families have been identied, as have relationship rejection and avoidance in social settings in groups including the Huntington disease, breast cancer, and alpha-1 antitrypsin deciency communities (20, 21, 76, 114, 145). Qualitative studies have
also provided insight into GD experienced in institutional domains such as adoption, documenting the nature and impacts of denial or imposed limitations in adopting children (22).
Fear of Genetic Discrimination

Alongside the substantiated evidence, reports on the fears about GD have grown, afrming general public fear of third parties potential misuse of genetic information (8, 21, 129, 142). A large-scale study among a US and Canadian hemochromatosis population found that 40% were concerned that genetic testing may lead to difculty in obtaining or keeping insurance (50). Another study of individuals at risk of Huntington disease demonstrated that 86% of respondents were concerned about GD for themselves and their relatives (19). High levels of concern about discrimination have also been cited among relatives of colon cancer patients
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(2, 139), fragile X patients (146), chronic disease patients (94), and breast cancer patients (5, 89, 115), where prevalence of concern has ranged from 25% to 66%. Recent evidence comparing the fears and experiences of GD among the same individuals has shown that the prevalence of fear of GD is almost twice as high as self-reported experiences of it [75.1% (175 of 233) versus 39.9% (93 of 233)] (19). These ndings are consistent with other research that suggests that concerns about GD exceed reported experiences, with the level of fear ranging from 7 to 60 times that of reported experiences (2, 5, 38, 115, 146). Fear of GD is thus widespread and has signicant public health implications.
IMPACT OF GENETIC DISCRIMINATION Behavioral Impacts

The ramications of peoples concern about GD can create barriers to access to genetic services that may offer them important therapeutic or management opportunities, and can result in suboptimal care for those who undergo genetic testing under conditions of anonymity or aliases. The association between concern about GD and reduced uptake of genetic testing is now well established (4, 5, 12, 42, 49, 50, 51, 71, 75, 82, 115, 116, 117, 133, 146). For example, the threat of health insurance discrimination led over half of eligible US women seeking breast cancer risk assessment [61.5% (48 of 78)] to decline genetic testing for the BRCA1/2 susceptibility gene (115). Approximately half of those who declined testing because of a fear of GD would test positive (115); these individuals are therefore denied possible psychological relief, preventative management, and/or treatment opportunities. These fears have also precipitated altered test-related behavior, including requests for anonymous testing, testing out of country, or personal payment for genetic tests to prevent insurers from obtaining and using the resulting information (2, 27, 52, 79, 90, 92, 105).
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Strategies for dealing with the fear of GD range from selectively disclosing genetic risk information, to avoiding changes to insurance or employment arrangements, to taking preemptive actions such as purchasing insurance prior to undergoing genetic testing and requesting that test results be excluded from medical records (2, 20, 82, 92). Recent reports indicate that individuals use direct-to-consumer testing as a strategy to pass under the radar of insurance scrutiny (56, 119, 142). These strategies raise salient issues and potential risks for patients, however: Insurance contracts may be subject to annulment or inability to make a future claim (owing to the potential violation of requirements to fully disclose relevant health information), and optimal care such as appropriate counseling and follow-up may be compromised because of the discontinuity of medical le information between health care professionals.
Psychological Impacts
A century of epidemiological research has now established that discrimination harms health (80). Inequality of various kinds is associated with health consequences ranging from mental health and substance abuse to physiological outcomes (24, 72, 80, 81). Results from GD studies suggest that GD is also likely to have adverse health consequences. For example, high levels of psychological distress are signicantly associated with experiences and fears of GD among individuals at risk of Huntington disease (19, 23), with fears of GD for ones relatives being more distressing for individuals than concerns about GD for themselves (19). In fact, GD is likely to have a psychological impact upon entire family systems, given that genetic testing has a profound impact on family functioning (73, 124, 125, 126). It is important, therefore, to recognize the potential physical and mental health impacts of GD in addition to its economic, policy, and social justice implications.
Clinical Practice Impacts

Health professionals also appear to harbor concerns about GD, which have affected their
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referral patterns for genetic testing. A survey of US physicians found that 81% had concerns about potential insurance discrimination for patients with positive results (40), and among cancer genetic service providers, 68% cited similar concerns (91). Another study of 271 general practitioners found that 13% would not encourage genetic testing despite a family history of cancer because they believed that mutation carriers would have difculty obtaining health insurance (99). Similar results were found among nongenetics professionals, where 11%31% cited concern about GD as a reason for nonreferral (26, 87). In fact, the higher the level of concern about GD, the less likely a provider was to refer for genetic testing (87). These concerns have led health providers to help their patients mitigate GD in clinical practice. Strategies employed have included performing anonymous genetic testing (27), maintaining shadow charts (copies of records retained separately from the patients chart) (25), encouraging patients to secure desired levels of insurance before proceeding with testing (11, 25), and not sending a letter to treating physicians so that they, along with insurers and employers, remain unaware of an individuals involvement in genetic testing and his or her results (11, 20). These strategies are not employed uniformly across jurisdictions, and thus some clinical practice guidelines have been updated to include them. For example, the International Huntington Association and the European Huntingtons Disease Network have recently revised the international genetic testing guidelines for Huntington disease (66) to incorporate a recommendation that clinicians seek patients consent before sending letters to other treating physicians. The recommendation suggests that clinicians discuss the benets and drawbacks of sending or withholding correspondence from other treating providersthat is, the benets of continued care and facilitative support on the one hand and the risk that the physician may share the test results with employers, insurers, and other third parties on the other. An inherent tension exists, however, in that these
discussions of potential risks and benets with clients can perpetuate the already-widespread fears about GD in the community.
Genetic Discrimination Within the Research Domain

GD has also featured within the research context. One signicant issue relates to appropriate levels of disclosure of individual genetic research results to research participants. Whereas an earlier position favored disclosing only aggregated research results to participants, more recent pressure is for disclosing clinically actionable (36) individual results (78), though this practice and its interpretation are fraught with numerous challenges (16, 54, 93). This development has obvious implications for participants knowledge of their genetic status, which can have ramications if used by third parties, with the potential for discrimination (135, p. 478). It is a fundamental requirement of the consent process, as highlighted in the Declaration of Helsinki (1964), to inform participants of, among other things, the risks of participation in research. As awareness of GD has grown, ethical guidelines regulating human subjects research have been modied in some jurisdictions to expressly encompass the risk of GD (28 at 7.2; 95 at 2.1, 3.56, and 3.5.12; 104 at 1.3 and Annotations para. 10). Thus, the potential for GD to arise from participation in genetic research has become a deterrent to prospective participants, which can potentially hamper progress in research. Anxiety about the potential misuse of genetic information by third parties like insurers and employers has already impacted research participation (49, 71). Individuals choices not to participate in genetic research projects because of concerns about GD can impede medical advancements and clinical trials, for example, in the promising areas of pharmacogenomics and associated tailored therapies (39, 60, 67). This will require proactive responses if the benets of genetic medicine are to be realized.
LEGAL AND POLICY RESPONSES TO GENETIC DISCRIMINATION

Responses to GD across different countries have focused mainly on insurance and employment, although some have been more broadly basede.g., the German Human Genetic Examination Act (2009). Regulation of the employment and insurance markets has been most pressing, as both have shown interest in collecting and using genetic information and have attracted widespread media attention (9; 45, pp. 22729; 108). Reactions to this policy issue have taken different forms across jurisdictions, including government inquiries, legislative reforms, codes of conduct/guidelines, moratoria, establishment of standing bodies with oversight of this area, and educative measures. In some instances, a combination of approaches has been adopted. Taken together, these measures reect a signicant amount of proactivity on the GD issue and indicate that principles of justice, equality, and respect for human dignity and autonomy call for decisive responses to protect people from GD. The path to reform has not been an easy one, however. Indeed, there have been a number of policy challenges, including debates about genetic exceptionalismwhether genetic information is inherently special or deserving of special treatment (45, pp. 510; 46, pp. 34147; 122)as well as the practical challenges of distinguishing between genetic and nongenetic information (14, pp. 3132; 46, pp. 34751).
International Perspectives
A review of legal and policy positions internationally reects the shared nature of the problem of GD. GD has gained prominence as a universal human rights issue through the inclusion of explicit statements in a number of key international instruments (ofcial international documents) requiring states to protect their citizens by taking steps to prohibit GD, typically appealing to principles of human dignity and equality (68). The rst among these was the United Nations Educational, Scientic, and Cultural Organization (UNESCO) Universal Declaration
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on the Human Genome and Human Rights (1997). It includes a strong statement proscribing GD: 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 (137, art. 6). The later UNESCO International Declaration on Human Data (2003) also prohibits discrimination and stigmatization: Every effort should be made to ensure that human genetic data are not used for purposes that are discriminatory or in any way that would lead to the stigmatization of an individual, a family or a group (138, art. 7). Furthermore, in its provisions dealing with privacy and condentiality, it restricts disclosure of genetic data to third parties, naming in particular insurers and employers [art. 14(b)]. There have since been numerous international texts that deal with GD (61, art. 5; 104 at 1.3 and Annotations para. 10). Although they do not have binding force, these instruments are signicant normative statements and have considerable inuence in setting international standards (45, 68, 107). At the supranational level, the Council of Europes European Convention on Human Rights and Biomedicine (1997; also known as the Oviedo Convention) prohibits any form of discrimination on the grounds of a persons genetic heritage (33, art. 11) and has been very inuential in promoting legislative initiatives in Europe. Table 1 presents a summary prole of the policy and legislative responses to GD of European and selected non-European countries. In 2000 the European Unions Charter of Fundamental Rights was enacted, which includes a broad nondiscrimination clause that encompasses genetic features (37, art. 21). Under the principle of primacy of European law, any national legislation in a European Union member state that conicts with this must be ignored by the national courts so that the European law can take effect.
National Inquiries
In a number of jurisdictions, major inquiries have also examined GD, often as a precursor to
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Table 1 Prole of legislative and policy responses to genetic discrimination (GD) of European and selected non-European countries Specic legislation Country Austria Belgium Bulgaria Croatia Cyprus Czech Republic Moratorium on GD Signatory to the Oviedo Convention European countries General or constitutional human rights/antidiscrimination protection
Denmark Estonia Finland France Georgia Germany Greece Hungary Iceland Ireland Italy Latvia Lithuania Luxembourg Moldova Netherlands Norway Poland Portugal Romania Slovakia Slovenia Spain Sweden Switzerland Turkey United Kingdom Non-European countries Australia Canada New Zealand United States Total 10/37 (27%) 16/37 (43%) 28/37 (76%) 27/37 (73%)
In the online versions of this article at the Annual Reviews Web site (http://www.annualreviews.org), click the blue underlined check marks to go directly to the relevant document. www.annualreviews.org Genetic Discrimination 443
reform. For example, in Australia, a two-year inquiry undertaken by the Australian Law Reform Commission and the National Health and Medical Research Councils Australian Health Ethics Committee into the protection of human genetic information resulted in a major two-volume report (6). The inquirys terms of reference included consideration of whether and to what extent a regulatory framework is required to provide protection from inappropriate discriminatory use of human genetic samples and information; many of the reports recommendations were directed at this issue and some have since been implemented, including some protections from GD. In the United Kingdom, numerous inquiries have dealt with the problem of GD (34, 59, 62, 63, 102). Although some recommendations have led to reform initiatives, not all have come to fruition; a key example of the latter is the recommendation made in the Human Genetics Commissions Inside Information report in 2002 (63) for separate UK legislation to prevent GD; failure to implement this has drawn critique (143). In Canada, a federal Inter-Departmental Initiative on Genetic Information and Privacy was undertaken in 20012002, and GD has also received attention from other governmental agencies, advisory bodies, and task forces (17, 77, 85).
Legislative Responses
Legislation with respect to GD can take a variety of formsfor example, stand-alone legislation dealing specically with GD, amendments to existing antidiscrimination legislation, and other legislation that makes some provision for protection against GD (45, p. 231). Legislation prohibiting genetic discrimination. Outright legislative prohibition of GD is considered the most interventionist approach and is inherently inexible in comparison with other regulatory approaches. However, the main advantage of introducing specic legislation is that it helps reinforce social disapproval of GD (45, p. 22). This is the position taken by several European countries, which have
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legislated to prohibit GD in certain circumstances. Belgium, with its introduction of the Law on Protection of Personal Data (1992), was the rst country to explicitly prohibit insurers from using the results of genetic tests when setting premium levels (17). Since then, a number of other European countries have followed suit, including Austria, Denmark, France, Germany, Lithuania, Norway, Portugal, and Sweden. This form of legislative prohibition is consistent with the above-mentioned Council of Europes European Convention on Human Rights and Biomedicine, which prohibits GD more broadly. States signing on to this convention undertake an obligation to enact legislation or regulation to protect against GD (17). Notably, some countries that have signed this convention have made specic reservations about the application of these provisions; for example, the Netherlands, which has signed but not ratiedthe convention, has adopted a qualied approach, allowing insurers to use the results of genetic tests but only for policies that are above a specied minimum. Some European countries, such as the Czech Republic, Italy, Poland, and Turkey, are simply relying on their signing of the convention together with existing laws and have not drafted additional national legislation to prohibit GD. Conversely, in some instances, countries that have legislated to prohibit GD are not signatories to the convention but have nevertheless introduced their own national legislatione.g., Germanys Human Genetic Examination Act (2009). The United States also took a strong legislative stance prohibiting GD with the enactment of GINA, which took effect on November 21, 2009. GINA prohibits discrimination in health insurance coverage and employment based on genetic information (74). Genetic information is dened in section 201 as including information about an individuals genetic tests, the genetic tests of family members, and family history. The effects of this federal act are to set a minimum level of protection against GD for all US citizens and, where relevant, to require compliance with more protective state laws (118). Health insurance and employment
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have been the major focus of GINA and are relevant in the United States because of the link between employers and access to health insurance through group plans (123). GINA has been hailed as the most sweeping antidiscrimination law in nearly 20 years (60, 119). Although many US states already had laws protecting against GD in health insurance and employment, coverage and degree of protection varied signicantly between states and were generally less protective than GINA. Notably, the US legislation does not deal with long-term care and life insurance policies. In contrast, health insurance has not been an aspect of GD concerns in many European countries, which have primarily publicly funded health insurance coverage and a private system that covers a relatively small segment of the population (68, 83). This also applies in Australia and Canada, which have governmentsubsidized universal health care schemes and private health insurance that is community rated. In Canada, two federal private members bills have been put forwardbill C-508 and bill C-536that propose amendment of the Canadian Human Rights Act to add genetic characteristics to its prohibited grounds of discrimination. There have also been developments at the provincial levelfor example, the development of private members bills to include genetic characteristics in the Ontario Human Rights Code (103). Other forms of legislative protection against genetic discrimination. Some countries have existing legislation that provides some protection from GD, although it was not specically enacted with this in mind. For example, many European Union countries have strong antidiscrimination provisions in their constitutions (Table 1). Canada and Australia have antidiscrimination legislation and/or human rights legislation covering discrimination on the basis of disability, which is generally considered to encompass discrimination on the basis of genetic risk status [e.g., the Canadian Charter of Rights and Freedoms (1982),
Canadian Human Rights Act (1985), and federal Australian Disability Discrimination Act (1992) (see 17, 108)]. Indeed, the Australian legislation has been amended in accordance with reform recommendations (6) to expressly include genetic predisposition to a disability. In several European jurisdictions, such as Belgium and Hungary, the relevant constitution includes a broad antidiscrimination provision. In contrast, the UK Disability Discrimination Act (1995)now replaced by the Equality Act (2010)had been interpreted as limited to existing disabilities. Such legislation does not restrict life insurers from taking genetic information into account in their underwriting. Indeed, some antidiscrimination acts have a specic insurer exemption for disability discrimination that requires them to be able to substantiate their decisions on actuarial grounds (84, 108). Another form of legislative protection is privacy legislation, which restricts access to personal information, usually requiring the consent of the relevant person before it can be collected, used, or disclosed to others [e.g., the federal Australian Privacy Act (1988), Canadian Personal Information Protection and Electronic Documents Act (2000), and European Union Data Protection Directive 95/46/EC (1995)]. A number of jurisdictions have legislated to restrict employers from asking for genetic information unless they can demonstrate that it is necessary to do so on occupational health and safety grounds [e.g., the federal Australian Disability Discrimination and Other Human Rights Amendment Act (2009) and the recently enacted UK Equality Act (2010) (sec. 58)]. Codes and Guidelines. Another avenue for reform has been the introduction of codes and guidelines in some jurisdictions, which, although they lack legal force, can help guide appropriate conduct. For example, the UK Information Commissioner has produced an Employment Practices Code (64) that gives clear guidance on the use of genetic testing in the workplace, consistent with advice from the Human Genetics Commission. This codes
supplementary guidance (65) cautions against the use of genetic test information in employment other than in clearly dened circumstances involving serious safety risk, or where it is known that a particular working environment might pose a specic danger to a worker with specied genetic variations. The code further requires informing the Human Genetics Commission of any proposal to use genetic testing for employment purposes (65 at 3.5.3).
Moratoria
Another response to GD has been the use of a voluntary moratorium. This exible approach has been adopted in several European jurisdictions to put a temporary restriction on insurers use of genetic information. Moratoria can take different forms, including partial and limited amount moratoria (14). Under a partial moratoriumas exists, for example, in Australia and New Zealand (68)insurers cannot request that an applicant undergo testing but may request the results of existing tests (14). Even this very limited form of moratorium is important from the perspective of protecting an individuals right not to know his or her genetic status. Under limited-amount moratoria, insurers would not ask an applicant to undergo genetic testing or request previous test results for policies under a certain amount, but can request and use genetic testing in premium assessments beyond this threshold or ceiling. A well-known example of a limited-amount moratorium is the position negotiated between the UK government and the Association of British Insurers (35). The initial moratorium, rst introduced in 1997, has been renewed on a number of occasions, most recently in 2011 to extend it to 2014. Pursuant to this arrangement, all but the largest insurance policies are covered, enabling applicants to obtain up to 500,000 of life insurance and up to 300,000 of critical illness, income protection, and long-term care insurance without having to disclose any genetic test results. For policies in excess of these amounts, insurers are entitled to use genetic test results for underwriting
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purposes but only for those tests authorized by the Genetics and Insurance Committeea body created by the government specically to vet genetic tests and determine whether they are suitable for use in insurance underwriting. This particular model thus involves both a limited-amount moratorium and a formal government-based system of regulatory review to judge the suitability of genetic tests for insurance underwriting. During its operation, the committee only gave permission for insurance companies to use the results of genetic tests for Huntington disease to underwrite policies in excess of the ceiling amounts. Although serving as a useful example, the UK insurance moratorium is somewhat atypical in that it has been in force for 15 years; more usually, moratoria are adopted as temporary solutions, allowing time for the development of more permanent solutions. Other European countries that have some form of moratorium include France, Germany, Greece, Ireland, Sweden, Switzerland, and Turkey (Table 1).
Independent Standing Bodies

Some countries have established independent standing bodies that oversee this area and provide policy advice to the government (e.g., the UK Human Genetics Commission and the Australian National Health and Medical Research Councils Human Genetics Advisory Committee). Although it is now being disbanded, the Human Genetics Commission has played an active policy role in discussions regarding the use of genetic information in employment and insurance. In 2003, following the commissions Inside Information report (63) and the governments response to it, the commission established the Genetic Discrimination Monitoring Group to monitor the use of genetic information in the workplace.
Other Policy Responses

In some jurisdictions, education has featured strongly among policy responses. Public awareness campaigns have been undertaken in Australia and the United Kingdom, where genetics education centers have been
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established to promote public engagement and professional education on genetics namely, the Centre for Genetics Education (http://www.genetics.edu.au) in Australia and Nowgen (Northwest Genetics Knowledge Park; http://www.nowgen.org.uk) in the United Kingdom (see 14). Other initiatives, although not necessarily state led, have included the development of advocacy groups such as the International Genetic Alliance (http://www.intga.org) and the Canadian Coalition for Genetic Fairness (http://www.ccgf-cceg.ca). The development of such groups seems to differ across societies; for example, consumer voices are less prominent and inuential in Australia than in the United States and Canada. Education of general practitioners has also been identied as an important step, particularly as studies have shown that most clinicians are unaware of laws relating to GD in their jurisdictions (99) and that their concern about GD has affected referral patterns for genetic testing (26, 87). In Australia, for example, the government agency Biotechnology Australia initiated a project in 2004 to develop a national educational resource on genetic medicine for general practitioners (44), and the National Health and Medical Research Council has issued an information paper that addresses issues of GD (96). Another important area is consumer education to provide information about GD and avenues for complaint for those who believe they have experienced GD; in Australia, for example, the Centre for Genetics Education has produced a fact sheet on insurance products and genetic testing (31). This is particularly pertinent given that the Australian GD study found that only 15% of 951 total survey respondents knew where to complain ofcially if they experienced negative treatment due to genetic factors (132) and that there are many barriers to pursuing legal remedies (113).
exclusive, that have been adopted in various countries to tackle GD. As these responses have typically focused on the insurance and employment sectors, they have by no means been a comprehensive solution to the GD problem given the potential for unfair treatment in health care, government, education, and other settings (23). There are undoubtedly a range of factors at play that inuence the solutions adopted, such as the historical, political, and social background of each legal system (whether common law or civil law) and the balance that is struck between a variety of political and social interests (45, p. 3). Of particular relevance is the perception of the societal function of insurance and the interplay between private and public health care systems (68). Notably, most of the countries that have opted for explicit prohibition of GD are European civil law jurisdictions, which reects the inuence of the Oviedo Convention discussed above. Common law jurisdictions have tended to adopt more of a wait-andsee approach, with the exception of the United States, although proactivity in that jurisdiction is explicable by that countrys particular health care and health insurance systems (68). In view of the shared nature of the problem of GD and the emerging patchwork of protection (45, p. 21), there have been calls for a greater level of harmonization in anti-GD policies (68, 97).
FUTURE RESEARCH AND POLICY DIRECTIONS

Although individual countries have determined their own responses to GD, common research and policy directions can be identied. GD has already been shown to have wide-ranging psychological and behavioral effects for individuals and families. Internationally, there should be ongoing monitoring of experiences of GD and its longer-term impacts on individuals, families, and communities, including the psychological, health, social, and economic consequences. The use of common metrics and instruments will aid in comparative studies of these phenomena. Fear about GD is clearly signicant within families, clinical services, and broader
Conclusion on Policy Responses

The foregoing discussion has highlighted a mix of approaches, not necessarily mutually
communities and also requires concerted and broad-ranging policy attention as such fear has the potential to limit the health benets that continued developments in genetic technology can offer. Of particular concern are newly emerging domains where GD is anticipated to occur, including personalized medicine, pharmacogenomics, and direct-to-consumer testing. Further, the practices of social institutions, insurers, and employers with regard to the use of genetic information should be made transparent, with continued monitoring by oversight committees to ensure its rational and appropriate use. The transparency and publicity of these decision-making processes may help dispel erroneous beliefs and reduce fears of GD. Finally, continued evaluation of the effectiveness of legislative, policy, and community responses to GD is imperative to ensure that ongoing developments in policy and practice are evidence based and can respond in a timely fashion with appropriate interventions. Although introduction of legal reforms is an important step in addressing the problem of GD, the limits of the law must also be acknowledged, and broader change is required for GD to be comprehensively dealt with. A multifaceted evidence-based strategy is needed that
includes a strong emphasis on education. Such education should occur at all levels, including community, health care provision, insurance, employment, and social institutions more broadly. To ensure duty of care and that patients are fully informed about the complexity of genetics, genetic testing, and potential GD, increased medical education in genetics and greater genetic literacy within broader communities will be required. Effective responses to GD will be possible only through widespread education of these communities regarding existing protections, relevant policies, and legislative developments and regarding the avenues for reporting GD. Future research is required to monitor GD reports and identify barriers for reporting and taking up legal remedies. In conclusion, we argue that GD is a significant ethical, legal, and psychosocial issue that requires multilevel responses to ensure social justice and equitable outcomes for consumers and members of the public who continue to be at risk of being impacted by this phenomenon. Future research should include the ongoing monitoring of GD and its impacts on communities and institutions as well as evaluation of the effectiveness of policy, educational, and systemic responses.
DISCLOSURE STATEMENT
The authors are not aware of any afliations, memberships, funding, or nancial holdings that might be perceived as affecting the objectivity of this review. LITERATURE CITED
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Contents
Annual Review of Genomics and Human Genetics Volume 13, 2012
Human Genetic Individuality Maynard V. Olson p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p 1 Characterization of Enhancer Function from Genome-Wide Analyses Glenn A. Maston, Stephen G. Landt, Michael Snyder, and Michael R. Green p p p p p p p p p p p 29 Methods for Identifying Higher-Order Chromatin Structure Samin A. Sajan and R. David Hawkins p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p 59 Genomics and Genetics of Human and Primate Y Chromosomes Jennifer F. Hughes and Steve Rozen p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p 83 Evolution of the Egg: New Findings and Challenges Katrina G. Claw and Willie J. Swanson p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p 109 Evolution of the Immune System in the Lower Vertebrates Thomas Boehm, Norimasa Iwanami, and Isabell Hess p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p 127 The Human Microbiome: Our Second Genome Elizabeth A. Grice and Julia A. Segre p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p 151 Functional Genomic Studies: Insights into the Pathogenesis of Liver Cancer Ze-Guang Han p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p 171 A Comparative Genomics Approach to Understanding Transmissible Cancer in Tasmanian Devils Janine E. Deakin and Katherine Belov p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p 207 The Genetics of Sudden Cardiac Death Dan E. Arking and Nona Sotoodehnia p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p 223 The Genetics of Substance Dependence Jen-Chyong Wang, Manav Kapoor, and Alison M. Goate p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p 241 The Evolution of Human Genetic Studies of Cleft Lip and Cleft Palate Mary L. Marazita p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p 263 Genomic Analysis of Fetal Nucleic Acids in Maternal Blood Yuk Ming Dennis Lo and Rossa Wai Kwun Chiu p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p 285
Enzyme Replacement Therapy for Lysosomal Diseases: Lessons from 20 Years of Experience and Remaining Challenges R.J. Desnick and E.H. Schuchman p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p 307 Population Identication Using Genetic Data Daniel John Lawson and Daniel Falush p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p 337 Evolution-Centered Teaching of Biology Karen Burke da Silva p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p 363 Ethical Issues with Newborn Screening in the Genomics Era Beth A. Tarini and Aaron J. Goldenberg p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p 381
Sampling Populations of Humans Across the World: ELSI Issues Bartha Maria Knoppers, Man H. Zawati, and Emily S. Kirby p p p p p p p p p p p p p p p p p p p p p p p p p 395 The Tension Between Data Sharing and the Protection of Privacy in Genomics Research Jane Kaye p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p 415 Genetic Discrimination: International Perspectives M. Otlowski, S. Taylor, and Y. Bombard p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p 433 Indexes Cumulative Index of Contributing Authors, Volumes 413 p p p p p p p p p p p p p p p p p p p p p p p p p p p p 455 Cumulative Index of Chapter Titles, Volumes 413 p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p p 459 Errata An online log of corrections to Annual Review of Genomics and Human Genetics articles may be found at http://genom.annualreviews.org/errata.shtml
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ANNUAL REVIEWS

Genetic Discrimination: International Perspectives

All authors contributed equally.

CONCEPTS AND CONTEXTS OF GENETIC DISCRIMINATION Genetic Discrimination: The Concept

Genetic Discrimination in Context

EVIDENCE OF GENETIC DISCRIMINATION

The Early Evidence

Genetic Discrimination: An Internationally Established Phenomenon

Fear of Genetic Discrimination

IMPACT OF GENETIC DISCRIMINATION Behavioral Impacts

Clinical Practice Impacts

Genetic Discrimination Within the Research Domain

LEGAL AND POLICY RESPONSES TO GENETIC DISCRIMINATION

Independent Standing Bodies

Other Policy Responses

FUTURE RESEARCH AND POLICY DIRECTIONS

Conclusion on Policy Responses

Annual Review of Genomics and Human Genetics Volume 13, 2012

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