A survey of U. S. state insurance commissioners concerning genetic testing and life insurance: Redux at 27.

Nearly three decades ago, scientists set out on one of the largest research endeavors in modern history-mapping the human genome. The research not only sparked new technologies and genetic tests, but also concomitant concerns regarding ethical, legal, and social implications of the technologies. These developments ultimately resulted in an expanded role for genetic counselors to educate consumers about the possible consequences of receiving genetic test results. In particular, many individuals undergoing testing worry that the resulting information could be used by social actors, such as life insurers, in harmful ways. Because life insurance is regulated at the state level, there is significant variability across the United States in laws and enforcement protecting consumers' genetic information. This article reports the results of a survey of U.S. state insurance commissioners regarding regulation of genetic testing and life insurance. The survey builds on a 1992 survey conducted by Jean E. McEwen et al. It returns to current U.S. state insurance commissioners to investigate changes in the climate surrounding genetic information use and risks of misuse within the insurance industry. In their 1992 survey, McEwen et al. found that: (a) genetic testing was not yet perceived to pose a significant problem for insurance rating, (b) life insurers had quite a bit of legal freedom to require and use genetic test results, and (c) insurance commissioners had received few consumers' complaints about the use of genetic information. Twenty-seven years later, our survey finds an increase in regulation protecting genetic information in insurance, but at a pace much slower than that of advances in new DNA technologies. This lag in policy to match technology increases potential risks for consumers. Our study further reveals certain inconsistencies in the letter of state law protecting consumers' genetic information and how state insurance commissioners apply that law. The study also shows that despite empirical evidence in the literature demonstrating consumer fear about genetic discrimination, consumers do not report these concerns to their state insurance commissioner. We suggest genetic counselors are key stakeholders who can help fill current gaps between consumers and the insurance industry.

Human Genetics Society of Australasia Position Statement: Genetic Testing and Personal Insurance Products in Australia.

The expansion of genetic and genomic testing in clinical practice and research and the growing market for at home personal genome testing has led to increased awareness about the impact of this form of testing on insurance. Genetic or genomic information can be requested by providers of mutually rated insurance products, who may then use it when setting premiums or determining eligibility for cover under a particular product. Australian insurers are subject to relevant legislation and an industry standard that was updated in late 2016. In 2018, the Human Genetics Society of Australasia updated its position statement on genetic testing and life insurance to account for these changes and to increase the scope of the statement to include a wider scope of insurance products that are not rated according to community risk, such as life, critical care, and income protection products. Recommendations include that providers of professional education involving genetics should include ethical, legal, and social aspects of insurance discrimination in their curricula; that the Australian government take a more active role in regulating use of genetic information in personal insurance, including enacting a moratorium on use of genetic test results; that information obtained in the course of a research project be excluded; and that there is improved engagement between the insurance industry, regulators, and the genetics profession.

Genetics and Insurance in Australia: Concerns around a Self-Regulated Industry.

BACKGROUND: Regulating the use of genetic information in insurance is an issue of ongoing international debate. In Australia, providers of life and other mutually rated insurance products can request applicants to disclose all results from any genetic test. Insurers can then use this information to adjust premiums and make policy decisions. The Australian Financial Services Council (FSC; an industry body) developed and maintains the relevant industry standard, which was updated in late 2016. Aims/Objective: To review the 2016 FSC Standard in light of relevant research and determine the legitimacy of the Australian regulatory environment regarding use of genetic information by insurers. RESULTS: We identified five concerns arising from the 2016 FSC Standard: (1) use of results obtained from research; (2) the requirement for an applicant to disclose whether they are "considering" a genetic test; (3) failure to account for genome sequencing and other technology developments; (4) limited evidence regarding adverse selection; and (5) the inappropriateness of industry self-regulation. CONCLUSION: Industry self-regulation of the use of genetic information by life insurers, combined with a lack of government oversight, is inappropriate and threatens to impede the progress of genomic medicine in Australia. At this critical time, Australia requires closer government oversight of the use of genetic information in insurance.

State responses to biotechnology.

This article reviews biotechnology legislation in the 50 states for 11 policy areas spanning 1990-2010, an era of immense growth in biotechnology, genetic knowledge, and significant policy development. Policies regarding health insurance, life insurance, long-term care insurance, DNA data bank collection, biotech research protection, biotech promotion and support, employment discrimination, genetic counselor licensing, human cloning, and genetic privacy each represent major policy responses arising from biotechnology and coinciding with key areas of state regulation (insurance, criminal justice, economic development, labor law, health and safety, privacy, and property rights). This analysis seeks to answer three questions regarding biotechnology legislation at the state level: who is acting (policy adoption), when is policy adopted (policy timing), and what is policy doing (policy content). Theoretical concerns examine state ideology (conservative or liberal), policy type (economic or moral), and the role of external events (federal law, news events, etc.) on state policy adoption. Findings suggest ideological patterns in adoption, timing, and content of biotech policy. Findings also suggest economic policies tend to be more uniform in content than moral policies, and findings also document a clear link between federal policy development, external events, and state policy response.

Recent Developments in Health Insurance, Life Insurance, and Disability Insurance Law.

This year's article covers key recent developments in life, health, and disability insurance law, including Supreme Court decisions on the constitutionality of the Affordable Care Act's contraception coverage provisions and on the enforceability of legal actions limitations period provisions in Employee Retirement Income Security Act (ERISA) plan documents; an alarming (but potentially short-lived) expansion of restitution as a form of "equitable relief" under ERISA; the latest battles in the stranger originated life insurance (STOLI) wars; and perennial issues arising out of disability and accident insurance cases.

Servicemembers' Group Life Insurance--Veterans' Group Life Insurance regulation update--ABO, VGLI application, SGLI 2-year disability extension. Final rule.

This document amends the Department of Veterans Affairs (VA) insurance regulations concerning Servicemembers' Group Life Insurance (SGLI) to reflect the statutory provisions of the Veterans' Benefits Act of 2010, which became law on October 13, 2010, and resulted in the need for amendments to change the SGLI Disability Extension period from 1 year to 2 years in duration; provide SGLI Traumatic Injury Protection (TSGLI) retroactive coverage effective from October 7, 2001, for all qualifying injuries regardless of the geographic location and military operation in which the injuries were incurred; and remove the SGLI and Veterans' Group Life Insurance (VGLI) Accelerated Benefits Option (ABO) discount rate. This rule also clarifies that ``initial premium'' refers to ``initial Veterans' Group Life Insurance premium,'' updates the current address of the Office of Servicemembers' Group Life Insurance (OSGLI), managed by Prudential Insurance Company of America, to reflect where the ABO application is mailed for processing, and corrects the OSGLI phone number. Finally, this rule removes the ABO application form from the regulation, and it corrects and clarifies language concerning the VGLI application period that was inadvertently incorrectly modified in a prior amendment of the regulations.

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.

Life insurance and genetic test results: a mutation carrier's fight to achieve full cover.

Currently, there is debate about life insurance companies' use of genetic information for assessing applicants. In his early 20s, James (pseudonym) was denied full life insurance cover because he revealed that he had discussed genetic testing with a genetic counsellor. He was later tested and found to carry a mutation in the MSH6 gene; after disclosing this, he was denied cover for cancer by two other life insurance companies. Unsatisfied with the insurance companies' risk assessments, and based on his understanding that regular colonoscopy significantly reduced his risk of cancer, James made a complaint to the Australian Human Rights Commission. After informing the third insurance company that he had done so, he was offered full coverage, which suggests that the company did not have actuarial data to justify its decision. This case provides evidence of the high level of initiative and proactivity required for a consumer to achieve a fair result. Few Australians would be in a position to pursue the level of research and advocacy undertaken by James (a professional with scientific training). We call on a collaborative approach between industry, government and researchers to address the issues that James's case raises about genetic testing and life insurance.

Genetic discrimination and life insurance: a systematic review of the evidence.

BACKGROUND: Since the late 1980s, genetic discrimination has remained one of the major concerns associated with genetic research and clinical genetics. Europe has adopted a plethora of laws and policies, both at the regional and national levels, to prevent insurers from having access to genetic information for underwriting. Legislators from the United States and the United Kingdom have also felt compelled to adopt protective measures specifically addressing genetics and insurance. But does the available evidence really confirm the popular apprehension about genetic discrimination and the subsequent genetic exceptionalism? METHODS: This paper presents the results of a systematic, critical review of over 20 years of genetic discrimination studies in the context of life insurance. RESULTS: The available data clearly document the existence of individual cases of genetic discrimination. The significance of this initial finding is, however, greatly diminished by four observations. First, the methodology used in most of the studies is not sufficiently robust to clearly establish either the prevalence or the impact of discriminatory practices. Second, the current body of evidence was mostly developed around a small number of 'classic' genetic conditions. Third, the heterogeneity and small scope of most of the studies prevents formal statistical analysis of the aggregate results. Fourth, the small number of reported genetic discrimination cases in some studies could indicate that these incidents took place due to occasional errors, rather than the voluntary or planned choice, of the insurers. CONCLUSION: Important methodological limitations and inconsistencies among the studies considered make it extremely difficult, at the moment, to justify policy action taken on the basis of evidence alone. Nonetheless, other empirical and theoretical factors have emerged (for example, the prevalence and impact of the fear of genetic discrimination among patients and research participants, the (un)importance of genetic information for the commercial viability of the private life insurance industry, and the need to develop more equitable schemes of access to life insurance) that should be considered along with the available evidence of genetic discrimination for a more holistic view of the debate.

Veterans' Group Life Insurance (VGLI) no-health period extension. Final rule.

The Department of Veterans Affairs (VA) is issuing this final rule that amends the regulations governing eligibility for Veterans' Group Life Insurance (VGLI) to extend to 240 days the current 120-day "no-health" period during which veterans can apply for VGLI without proving that they are in good health for insurance purposes. The purpose of this rule is to increase the opportunities for disabled veterans to enroll in VGLI, some of whom would not qualify for VGLI coverage under existing provisions. This document adopts as a final rule, without change, the proposed rule published in the Federal Register on June 25, 2012.

Servicemembers' Group Life Insurance Traumatic Injury Protection Program--genitourinary losses. Final rule.

The Department of Veterans Affairs (VA) is issuing this final rule that amends the regulations governing the Servicemembers' Group Life Insurance Traumatic Injury Protection (TSGLI) program by adding certain genitourinary (GU) system losses to the TSGLI Schedule of Losses and defining terms relevant to these new losses. This amendment is necessary to make qualifying GU losses a basis for paying TSGLI benefits to servicemembers with severe GU injuries. The intended effect is to expand the list of losses for which TSGLI payments can be made. This document adopts as a final rule, without change, the interim final rule published in the Federal Register on December 2, 2011.