Comparative perspectives: regulating insurer use of genetic information

Prince, Anya

doi:10.1038/s41431-018-0293-1

Cited by 14 publications

(11 citation statements)

References 4 publications

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“…In addition, robust legislation is necessary to prevent discrimination and stigmatization, in particular, by insurers and employers. Current approaches vary by country, but can be broadly divided into four categories: moratoria, industry self-regulation, legal limitations to the use of genetic information, and legal bans 210,211 . As an example, in the UK, an open-ended code of practice between insurers and the government exists, prohibiting the use of predictive genetic tests except in defined circumstances 212 .…”

Section: Ethical Legal and Social Implicationsmentioning

confidence: 99%

Personalized early detection and prevention of breast cancer: ENVISION consensus statement

et al. 2020

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The European Collaborative on Personalized Early Detection and Prevention of Breast Cancer (ENVISION) brings together several international research consortia working on different aspects of the personalized early detection and prevention of breast cancer. In a consensus conference held in 2019, the members of this network identified research areas requiring development to enable evidence-based personalized interventions that might improve the benefits and reduce the harms of existing breast cancer screening and prevention programmes. The priority areas identified were: 1) breast cancer subtype-specific risk assessment tools applicable to women of all ancestries; 2) intermediate surrogate markers of response to preventive measures; 3) novel non-surgical preventive measures to reduce the incidence of breast cancer of poor prognosis; and 4) hybrid effectiveness–implementation research combined with modelling studies to evaluate the long-term population outcomes of risk-based early detection strategies. The implementation of such programmes would require health-care systems to be open to learning and adapting, the engagement of a diverse range of stakeholders and tailoring to societal norms and values, while also addressing the ethical and legal issues. In this Consensus Statement, we discuss the current state of breast cancer risk prediction, risk-stratified prevention and early detection strategies, and their implementation. Throughout, we highlight priorities for advancing each of these areas.

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Section: Ethical Legal and Social Implicationsmentioning

confidence: 99%

Personalized early detection and prevention of breast cancer: ENVISION consensus statement

et al. 2020

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“…Additionally, there is a real risk that insurance coverage may be denied to those who receive a burdening outcome in the "genetic lottery", which results in greater need for solidarity (Prince 2019). Importantly, it could be detrimental to public health if people avoid genetic testing for medical or research purposes out of fear of discrimination (Keogh et al 2017).…”

Section: Discussionmentioning

confidence: 99%

“…However, some of them consider it unethical to charge more for genetic factors that are outside of the control of the carrier, though a counterargument is that many conventional risks are also outside the control of the affected. Additionally, there is a real risk that insurance coverage may be denied to those who receive a burdening outcome in the “genetic lottery”, which results in greater need for solidarity (Prince 2019). Importantly, it could be detrimental to public health if people avoid genetic testing for medical or research purposes out of fear of discrimination (Keogh et al 2017).…”

Section: Discussionmentioning

confidence: 99%

“…Because of the real risk of genetic discrimination, many governments have taken a regulatory stance that favors consumer privacy over corporate interests by mostly limiting the rights of insurance providers to request and use genetic information to reject applications or determine premiums (Borry et al, 2012; Prince, 2019; Sijbrands et al, 2009). In countries that lack regulation, the insurance industry has frequently chosen to self-regulate with voluntary moratoriums.…”

Section: Introductionmentioning

confidence: 99%

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Genetic risk scores of disease and mortality capture differences in longevity, economic behavior, and insurance outcomes

Linnér¹,

Koellinger²

2020

Preprint

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Widespread genetic testing for diseases may cause adverse selection, escalating premiums, or discrimination in various insurance markets. Here, without systematically informing study participants of their genetic predisposition, we estimate to what extent genetic data are informative about differences in longevity, health expectations, and economic behavior. We compute measures of genetic liability (polygenic scores) for 27 common diseases and mortality risks in 9,272 participants of the Health and Retirement Study (HRS). Survival analysis suggests that the highest decile of cumulative genetic risk can distinguish a median lifespan up to 4.5 years shorter, a difference that is similar to or larger than that distinguished by conventional actuarial risk factors, including sex. Furthermore, greater genetic liability is associated with less long-term care insurance, among other economic behaviors. We conclude that the rapid developments in genetic epidemiology pose new challenges for regulating consumer genetics and insurance markets, requiring urgent attention from policymakers.

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“…By 2020 the EU plans to introduce uniform educational standards for training masters in the area of genetic counseling [16]. Outside the European community, the attitude towards determining the legal status of a person providing counseling services in the area of genetics remains ambiguousthe relevant profession either remains unrecognized neither by the state, nor by professional communities (China, Russia, India), or it is regulated by the state through the establishment of professional standards that are obligatory for compliance (Cuba, Israel), or recognized by the professional community of geneticists that independently establishes the requirements for training a specialist, as well as ethical requirements for its activities (USA, Saudi Arabia, Australia) [17]. Thus, it is still relevant to solve the issue on the possibility of state recognition of the profession of a genetic counselor, as well as the degree of state participation in such activities through legal regulation.…”

Section: The Article Was Aimed At Defining Principles Of the Correlatmentioning

confidence: 99%

Principles of Correlation Between Self-Regulation and State Legal Regulation of the Relations Related to Genetic Research: Modern Prospects

Mashkova¹,

Varlen²,

Zenin³

et al. 2019

IJRTE

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The principles of correlation between self-regulation and state legal regulation of the relations related to genetic research have been discussed in this article. Today the development of genetics and applied genomic medicine has a direct effect on legal relations on protecting the rights and legal interests of an individual. The main goal of the study is to research regulatory legal acts, judicial practice, and doctrinal sources aimed at determining the optimal correlation of the beginnings of self-regulation and state legal regulation of relations related to genetic research. When writing the article, the methods of collecting and studying singularities, the generalization methods, the scientific abstraction methods, as well as the method of inquiry into regularities have been used. This study is characterized by using the experience of foreign self-regulatory organizations and professional associations involved in genetics. In their study, for the first time, the authors have substantiated the conclusion that the model of the optimal correlation of state regulation and self-regulation of legal relations related to genetic research is based on the following principles: 1) informed consent for genetic research and protection of the confidentiality of the obtained information, 2) participation of self-regulating associations of medical geneticists in developing national standards for the quality of medical services in genetic research, as well as the requirements for medical organizations and medical employees who provide them, and 3) legalization of the legal status of a person providing counseling services in genetic research and in associated areas related to defining a strategy for the treatment of genetically determined diseases and the use of assisted reproductive technologies (genetic counselors). In the article it has also been stated that it is necessary to define the legal mode of protecting the information obtained during the genetic research depending on classifying such research as a certain specific category – diagnostic, pre-symptom or prognostic (carried out to assess the vulnerability of an individual to a specific disease). Third parties can only access the results of diagnostic genetic research.

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Comparative perspectives: regulating insurer use of genetic information

Cited by 14 publications

References 4 publications

Personalized early detection and prevention of breast cancer: ENVISION consensus statement

Personalized early detection and prevention of breast cancer: ENVISION consensus statement

Genetic risk scores of disease and mortality capture differences in longevity, economic behavior, and insurance outcomes

Principles of Correlation Between Self-Regulation and State Legal Regulation of the Relations Related to Genetic Research: Modern Prospects

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