Ine Van Hoyweghen

European Practices of Genetic Information and Insurance: Lessons for the Genetic Information Nondiscrimination Act

ONE OF THE MOST CONTENTIOUS TOPICS IN PUBlic policy debates on genetics has been the use of genetic information by insurance companies. In the rush to confront concerns about potential misuses of genetic information, most European countries have since 1990 enacted genetic nondiscrimination legislation for life or health insurance. In the United States, the Genetic Information Nondiscrimination Act (GINA) was recently signed into law to provide protection against genetic discrimination for employment and health insurance. In US public opinion surveys over the years, an increasing majority of respondents have indicated a desire for legislation such as GINA. Advocates of the bill claim that many individuals defer having genetic tests performed—for instance, to detect a mutation that increases risk of breast cancer—for fear that insurers or employers will discriminate against them based on that information. The threat of genetic discrimination has also hindered medical research; according to Collins, “Unless Americans are convinced that the information will not be used against them, the era of personalized medicine will never come to pass.” These fears also seem to disrupt health care delivery. To keep genetic information out of their medical records and out of the hands of insurers, patients sometimes refuse genetic testing that could benefit their health; they also sometimes pay out of pocket or use assumed names to keep the information private. The intentions of enacting GINA are clear: genetic discrimination in consideration for insurance and employment will be banned by federal legal mandate. The act should help alleviate public fear of genetic discrimination, enabling the progress of genetic research and preventive health or use of genetics in clinical care.

Making genetics not so important: Family work in dealing with familial hypertrophic cardiomyopathy

The literature shows that genetic testing could stimulate solidarity among family members, but also lead to major conflicts. To prevent negative effects, clinical geneticists and ethicists have stressed the importance of good communication within families. In this qualitative study, we followed six extended families in the southern and eastern Netherlands involved in genetic testing for familial hypertrophic cardiomyopathy for three and a half years. In total 57 members of these families were interviewed in depth, most more than once. Our analysis shows that genetic testing does affect families, but that families perform a lot of balancing work in order to prevent genetic testing from becoming too all-encompassing. There is much more continuity in family life than is often thought. Moreover, as these families demonstrate different styles of family work, establishing a single norm of good communication in clinical genetics might in fact be more harmful for family life than genetic testing itself.

The paradox of public health genomics: Definition and diagnosis of familial hypercholesterolaemia in three European countries

Aims: Considerable progress in public health is expected to occur from the application of genomic knowledge and technologies. This is the subject of a newly emerging field of public health genomics. In this paper we analyze differences in how public health genomics is developing in the Netherlands, the UK and Germany through the definition and diagnosis of familial hypercholesterolaemia (FH), an inherited predisposition for coronary heart disease. Methods: We analyzed the emergence of public health genomics within the framework of a project on the incorporation of genetics in western European healthcare schemes. Our analysis is based on document analysis and in-depth interviews. Results: In the Netherlands, public health genomics takes shape through a genetic screening programme for FH, looking for mutations on two specific genes; in the UK it emerges through a strategy of ‘‘mainstreaming’’ genetics in health care that aims to identify hereditary predispositions by means of phenotypic diagnosis; and in Germany public health genomics is elaborated at a conceptual level, leaving a diagnosis of FH to individual physicians who occasionally prescribe genetic testing. Conclusions: Our analysis shows how public health genomics gets constituted differently in different countries and, moreover, produces particular patterns of inclusion and exclusion from care. These patterns indicate a paradox in public health genomics, which consists of an inverse relationship between the use of advanced molecular genetic testing technologies and the number and variety of individuals at risk included in the target population. This paradox presents a challenge for professionals and policy makers in public health genomics.

Genetic 'risk carriers' and lifestyle 'risk takers'. Which risks deserve our legal protection in insurance?

Over the past years, one of the most contentious topics in policy debates on genetics has been the use of genetic testing in insurance. In the rush to confront concerns about potential abuses of genetic information, most countries throughout Europe and the US have enacted genetics-specific legislation for insurance. Drawing on current debates on the pros and cons of a genetics-specific legislative approach, this article offers empirical insight into how such legislation works out in insurance practice. To this end, ethnographic fieldwork was done in the underwriting departments of Belgian insurance companies. Belgium was one of the first European countries introducing genetics-specific legislation in insurance. Although this approach does not allow us to speak in terms of ‘ the causal effects of the law’, it enables us to point to some developments in insurance practice that are quite different than the law’s original intentions. It will not only become clear that the Belgian genetics-specific legislation does not offer adequate solutions to the underlying issues it was intended for. We will also show that, while the legislation’s focus has been on the inadmissibility of genetic discrimination, at the same time differences are made in the insurance appraisal within the group of the asymptomatic ill. In other words, by giving exclusive legal protection to the group of genetic risks, other non-genetic risk groups are unintendedly being under-protected. From a policy point of view, studying genetics-specific legislation is especially valuable because it forces us to return to first principles: Which risks deserve our legal protection in insurance? Who do we declare our solidarity with?

Life insurance: genomic stratification and risk classification

With the development and increasing accessibility of new genomic tools such as next-generation sequencing, genome-wide association studies, and genomic stratification models, the debate on genetic discrimination in the context of life insurance became even more complex, requiring a review of current practices and the exploration of new scenarios. In this perspective, a multidisciplinary group of international experts representing different interests revisited the genetics and life insurance debate during a 2-day symposium ‘Life insurance: breast cancer research and genetic risk prediction seminar’ held in Quebec City, Canada on 24 and 25 September 2012. Having reviewed the current legal, social, and ethical issues on the use of genomic information in the context of life insurance, the Expert Group identified four main questions: (1) Have recent developments in genomics and related sciences changed the contours of the genetics and life insurance debate? (2) Are genomic results obtained in a research context relevant for life insurance underwriting? (3) Should predictive risk assessment and risk stratification models based on genomic data also be used for life insurance underwriting? (4) What positive actions could stakeholders in the debate take to alleviate concerns over the use of genomic information by life insurance underwriters? This paper presents a summary of the discussions and the specific action items recommended by the Expert Group.

Unravelling fears of genetic discrimination: an exploratory study of Dutch HCM families in an era of genetic non-discrimination acts

Since the 1990s, many countries in Europe and the United States have enacted genetic non-discrimination legislation to prevent people from deferring genetic tests for fear that insurers or employers would discriminate against them based on that information. Although evidence for genetic discrimination exists, little is known about the origins and backgrounds of fears of discrimination and how it affects decisions for uptake of genetic testing. The aim of this article is to gain a better understanding of these fears and its possible impact on the uptake of testing by studying the case of hypertrophic cardiomyopathy (HCM). In a qualitative study, we followed six Dutch extended families involved in genetic testing for HCM for three-and-a-half years. Semi-structured interviews were conducted with 57 members of these families. Based on the narratives of the families, we suggest that fears of discrimination have to be situated in the broader social and life-course context of family and kin. We describe the processes in which families developed meaningful interpretations of genetic discrimination and how these interpretations affected family members’ decisions to undergo genetic testing. Our findings show that fears of genetic discrimination do not so much stem from the opportunity of genetic testing but much more from earlier experiences of discrimination of diseased family members. These results help identify the possible limitations of genetic non-discrimination regulations and provide direction to clinicians supporting their clients as they confront issues of genetic testing and genetic discrimination.

Constructing “best interests”: Genetic testing of children in families with hypertrophic cardiomyopathy

Professional guidelines on genetic testing of children have recently shifted their focus from protecting the childs autonomous choice to professionals, together with parents, striving to work in the childs “best interest.” This notion of “best interest” allows room for therapeutical as well as psychological and social considerations, and gives rise to the question how parents and professionals weigh up the childs best interest in practice. In this qualitative study, we followed six extended families involved in genetic testing for hypertrophic cardiomyopathy in the Netherlands for 3½ years. In total 57 members of these families were interviewed in depth; many of them more than once. Our empirical analysis shows that the best interest of a child is constructed via long‐term processes in the broader context of family and kin. In this context, “best interests” are considered and reconsidered. We conclude that a childs best interest should not be framed as the result of an instantaneous agreement between parents and professionals. In dealing with genetic testing of children, parents as well as professionals reflect on and learn from the processes of generating new meanings of “best interest.” To enable professionals to deal with the variety in family life, these learning processes should be documented closely.

‘Genetics is not the issue’: Insurers on genetics and life insurance

This article offers an analysis of the way private insurers deal with the issue of genetics and insurance. Drawing on specific written insurance sources, a reconstruction is made of internal debates on genetics and insurance within the private insurance world in Europe and the United States. The article starts by analyzing the way insurers initially framed the issue of genetics. It proceeds by showing how ideas with respect to this issue developed beyond public policy debates in the nineties. Although not a strictly linear development, a trend towards a change in perspective can be demonstrated: at the beginning most insurance companies took another stance than they do nowadays. The article concludes by questioning the effect of these changes within the insurance world for the definition of the problem with respect to genetics and insurance. Does taking into account the public concerns around genetics also include taking genetics as a public problem?

Providing preimplantation genetic diagnosis in the United Kingdom, The Netherlands and Germany: a comparative in-depth analysis of health-care access

In recent years, preimplantation genetic diagnosis (PGD) has developed into a routine diagnostic procedure in health care. Although during this process, several initiatives have been employed to regulate the procedure, access to PGD may be hampered by the diversity in health-care arrangements or therapeutic cultures in different countries. This article demonstrates how PGD provision practices depend on much more than regulation alone, by providing an in-depth comparative analysis of the provision of PGD in Britain, the Netherlands and Germany. In analysing regulation, organization, selection of indications, and mechanisms and criteria for reimbursement, differences between these countries can be identified. This is important, since differences in PGD provision can have enormous consequences for the access of individual patients in different countries. Somewhat paradoxically, this article concludes that even though differences in access do have serious consequences, they also serve the establishment of PGD. Developing access to PGD in national therapeutic cultures can contribute to making PGD routine health care in a way that may not be achievable by harmonizing regulation.

Taming the wild life of genes by law? Genes reconfiguring solidarity in private insurance

This article introduces thinking from science and technology studies (STS) and in particular the work of Callon to study the topic of genetic testing and private insurance markets. To explore the fruitfulness of this STS approach, I will reconstruct the conventional framing of genetics and insurance as a way of understanding the underlying mechanisms that have led to the solutions of enacting Genetic Non-Discrimination Acts (GNDAs) in private insurance markets. I argue how this conventional framing has been underpinned by a shared paradigm of genetic exceptionalism and I indicate the role of genes as operators of solidarity in aligning a hybrid coalition of concerned groups and people, captured by the trope of genetic discrimination. Using this STS approach, I will point to the unanticipated effects of GNDAs in insurance markets, in the sense that new issues may arise – for example new struggles for solidarity – issues that cannot be identified by the conventional framing of genetics and insurance. This may pave the way for new configurations of solidarity in insurance in the molecular age. I suggest how genes, instead of simply being an object of discrimination, can be important operators of solidarity. Sensibility to the co-shaping of genes and the social, and the new identities, groups and biosocial relations involved in the manufacture of biosciences, law and insurance classifications is essential for better understanding of the politics of insurance markets, for the role of genes in reconfiguring solidarity in insurance markets and for informed governance. This article should be seen as programmatic, fleshing out important contemporary issues in the relationship between genetic technologies, insurance markets and politics that really need much more detailed analyses and discussion.This article introduces thinking from science and technology studies (STS) and in particular the work of Callon to study the topic of genetic testing and private insurance markets. To explore the fruitfulness of this STS approach, I will reconstruct the conventional framing of genetics and insurance as a way of understanding the underlying mechanisms that have led to the solutions of enacting Genetic Non-Discrimination Acts (GNDAs) in private insurance markets. I argue how this conventional framing has been underpinned by a shared paradigm of genetic exceptionalism and I indicate the role of genes as operators of solidarity in aligning a hybrid coalition of concerned groups and people, captured by the trope of genetic discrimination. Using this STS approach, I will point to the unanticipated effects of GNDAs in insurance markets, in the sense that new issues may arise – for example new struggles for solidarity – issues that cannot be identified by the conventional framing of genetics and insurance. This m...