Genetic testing and insurance. The Ad Hoc Committee on Genetic Testing/Insurance Issues.

The rapid expansion of opportunities for genetic testing has been accompanied by complex questions about the appropriate relationships between providers, patients, and insurers. Some of these questions involve large public-policy decisions, such as whether the government should guarantee access to health care for all citizens. Universal access to health care, without regard to past, present, or future risk of disease, could eliminate risk-oriented underwriting in health-care coverage. A positive response to that question will ameliorate other problems. Until universal access is reality, genetic testing and genetic diagnosis will raise important issues for the practicing geneticist. How much does a client need to know about insurance implications before consenting to a genetic test? Should patients be counseled to purchase insurance before being tested? Should genetic information be excluded from medical records before their release to insurance companies for routine reimbursements or underwriting? What are the ethical and legal responsibilities of the geneticist?     

Evidence-based underwriting in the molecular age: the politics of reinsurance companies towards the genetics issue

One of the most contentious topics in public policy debates on genetics has been the use of genetic information by private insurance companies. Confronted with legislation prohibiting the use of genetics in private insurance, the insurance industry has been prompted to deal proactively with the issue. One central feature of this change in tactics is the investment in “evidence-based underwriting”, currently promoted by transnational reinsurance companies. This strategy should contribute to de-politicizing the genetics issue in insurance. Drawing on fieldwork in reinsurance companies and in the broader field of insurance, this article analyzes how reinsurance companies deal with this strategy of evidence-based underwriting and whether it has delivered on its promises. Making use of the theoretical work of Barry and others on the politics of calculation in transnational technical zones, we show how the explicit goal of evidence-based underwriting by reinsurance companies helps to reveal uncertainty in life underwriting, which in turn stimulates new contestation and discussion over the issue of genetics and, more generally, the life underwriting process. In fact, it seems that the turn towards evidence-based underwriting standards has provoked new sources of politicization. While the intentions of evidence-based underwriting strategies are to de-politicize the genetics issue, the effects of this politics of calculation may appear to be political (again).     

Reassessing insurers' access to genetic information: genetic privacy, ignorance, and injustice

Many countries have imposed strict regulations on the genetic information to which insurers have access. Commentators have warned against the emerging body of legislation for different reasons. This paper demonstrates that, when confronted with the argument that genetic information should be available to insurers for health insurance underwriting purposes, one should avoid appeals to rights of genetic privacy and genetic ignorance. The principle of equality of opportunity may nevertheless warrant restrictions. A choice-based account of this principle implies that it is unfair to hold people responsible for the consequences of the genetic lottery, since we have no choice in selecting our genotype or the expression of it. However appealing, this view does not take us all the way to an adequate justification of inaccessibility of genetic information. A contractarian account, suggesting that health is a condition of opportunity and that healthcare is an essential good, seems more promising. I conclude that if or when predictive medical tests (such as genetic tests) are developed with significant actuarial value, individuals have less reason to accept as fair institutions that limit access to healthcare on the grounds of risk status. Given the assumption that a division of risk pools in accordance with a rough estimate of people's level of (genetic) risk will occur, fairness and justice favour universal health insurance based on solidarity.     

A survey of state insurance commissioners concerning genetic testing and life insurance.

Rapid advances in genetic testing have stimulated growing concern about the potential for misuse of genetic data by insurance companies, employers, and other third parties. Thus far, reports of genetically based discrimination in life insurance have been anecdotal. Reasoning that state insurance commissioners were likely to be aware of (1) the extent of current use of and interest in genetic tests by life insurers and (2) consumer complaints about insurance being denied because of genetic condition or because of genetic test results, we conducted a survey of that group. We received responses from 42 of the 51 jurisdictions. Our results suggest (1) that those who regulate the life insurance industry do not yet perceive genetic testing to pose a significant problem in how insurers rate applicants, (2) that life insurers have much legal latitude to require genetic tests, and (3) that so far few consumers have formally complained to commissioners about the use of genetic data by life insurers.     

Genetic information and insurance: some ethical issues.

Life is risky, and insurance provides one of the best developed ways of controlling risks. By pooling, and so transferring risks, those who turn out to suffer antecedently uncertain harms can be assured in advance that they will be helped if those harms arise; they can then plan their lives and activities with confidence that they are less at the mercy of ill fortune. Both publicly organized and commercial insurance can organize the pooling of risk in ways that are beneficial for all concerned. They provide standard ways of securing fundamental ethical values such as solidarity and mutuality. Although policy holders do not know or contract with one another, each benefits from the contribution of others to a shared scheme for pooling and so controlling risk. Although there is a limit to the degree to which commercially-based insurance, where premiums depend on risk level, can go beyond mutuality towards solidarity, in practice it too often achieves a measure of solidarity by taking a broad brush approach to pooling risk. However, the ordinary practices of insurance, and in particular of commercial insurance, also raise ethical questions. These may be put in simple terms by contrasting the way in which an insurance market discriminates between different people, on the basis of characteristics that (supposedly) determine their risk level, and our frequent abhorrence of discrimination, in particular on the basis on religious, racial and gender characteristics. Are the discriminations on which insurance practice relies upon as standard acceptable or not? The increasing availability of genetic information, which testing (of individuals) and screening (of populations) may provide, could lend urgency to these questions. Genetic information may provide a way of obtaining more accurate assessment of individual risks to health and life. This information could be used to discriminate more finely between the risk levels of different individuals, and then to alter the availability and the costs of health, life and unemployment insurance to them. Since all of these forms of insurance bear very directly on the way most people live, it will matter to them how (if at all) insurers take account of genetic information. Will use of this information improve or damage the capacity of insurance to provide confidence in the face of uncertain harms, and help if they happen? Will it discriminate in acceptable or in unacceptable ways? Will it support or damage the sorts of mutuality and solidarity various sorts of insurance schemes have successfully institutionalized?     

Laws restricting health insurers' use of genetic information: impact on genetic discrimination

Since 1991, 28 states have enacted laws that prohibit insurers' use of genetic information in pricing, issuing, or structuring health insurance. This article evaluates whether these laws reduce the extent of genetic discrimination by health insurers. From the data collected at multiple sites, we find that there are almost no well-documented cases of health insurers either asking for or using presymptomatic genetic test results in their underwriting decisions, either (a) before or after these laws have been enacted or (b) in states with or without these laws. By using both in-person interviews with insurers and a direct market test, we found that a person with a serious genetic condition who is presymptomatic faces little or no difficulty in obtaining health insurance. Furthermore, there are few indications that the degree of difficulty varies according to whether a state regulates the use of genetic information. Nevertheless, these laws have made it less likely that insurers will use genetic information in the future. Although insurers and agents are only vaguely aware of these laws, the laws have shaped industry norms and attitudes about the legitimacy of using this information.     

A survey of medical directors of life insurance companies concerning use of genetic information.

Rapid advances in our ability to test persons presymptomatically for genetic diseases have generated increasing concern that genetic information will be abused by insurance companies. Reasoning that the insurance companies may have the strongest interest in using genetic data and that the medical directors of those companies with responsibility for rating applicants would be a good source of information on the use of such data, we conducted a large survey of medical directors of North American life insurance companies. We received responses from 27 medical directors. Our results suggest that (1) few insurers perform genetic tests on applicants, but most are interested in accessing genetic test information about applicants that already exists; (2) the degree of insurers' interest in using genetic test results may depend on the face amount of the policy applied for and on the specificity and sensitivity of the test; (3) many companies employ underwriting guidelines with respect to certain genetic conditions but may not always have specific actuarial data in house to support their rating decisions; (4) a considerable degree of subjectivity is involved in most insurers' rating decisions; and (5) some of the medical directors who responded to our survey are not fully informed about certain basic principles of medical genetics.     

Genetic testing,life insurance,and adverse selection.

Life insurance is a key element of the UK social structure in terms of family protection and house purchase; it thus needs to be viewed in this broad context, rather than solely as a commercial activity. Insurers have not so far actively requested genetic tests for life insurance, but have insisted on knowing of and being able to act on existing genetic test information. The main reason given for this has been to avoid serious adverse selection; however, this has never been adequately estimated. Review of the different major categories of Mendelian genetic disorders suggests that the scope for adverse selection is extremely limited and that insurers would lose little, and possibly gain more, by foregoing the disclosure and use of this information in relation to life insurance policies of ''normal'' size and nature. The likely future use in service of genetic tests based on susceptibility or population screening makes it especially important that the issue is rapidly resolved for Mendelian disorders; so far there is no sign that insurers are willing to achieve this.     

关于终末期糖尿病肾病的医疗保险研究

目的 探索终末期肾病的保险精算方法,为终末期肾病以及其他重大疾病的保险研究方法提供参考和借鉴。为完善我国终末期肾病的医疗保障提供理论依据。方法 拟和糖尿病病人终末期肾病发病概率模型、生存概率模型,采用寿险精算的思想 , 考虑长期保险过程中利率因素的影响,建立终末期糖尿病肾病的保险方案。结果 糖尿病患者终末期肾病的发病率随年龄增加而上升。保费与投保时年龄有关。对于终身长期疾病保险,利率的变化对保费的影响较大。结论 将寿险精算的方法应用到糖尿病终末期肾病保险中具有可行性,随着糖尿病的发病率迅速上升,终末期肾病造成的经济负担需要健全和完善的社会医疗保障体系。     

The Added Value of Medical Testing in Underwriting Life Insurance

Background

In present-day life-insurance medical underwriting practice the risk assessment starts with a standard health declaration (SHD). Indication for additional medical screening depends predominantly on age and amount of insured capital. From a medical perspective it is questionable whether there is an association between the level of insured capital and medical risk in terms of mortality. The aim of the study is to examine the prognostic value of parameters from the health declaration and application form on extra mortality based on results from additional medical testing.

Methods

A history register-based cohort study was conducted including about 15.000 application files accepted between 2007 and 2010. Blood pressure, lipids, cotinine and glucose levels were used as dependent variables in logistic regression models. Resampling validation was applied using 250 bootstrap samples to calculate area under the curves (AUC’s). The AUC was used to discriminate between persons with and without at least 25% extra mortality.

Results

BMI and the overall assessment of the health declaration by an insurance physician or medical underwriter showed the strongest discrimination in multivariable analysis. Including all variables at minimum cut-off levels resulted in an AUC of 0.710 while by using a model with BMI, the assessment of the health declaration and gender, the AUC was 0.708. Including all variables at maximum cut-off levels lead to an AUC of 0.743 while a model with BMI, the assessment of the health declaration and age resulted in an AUC of 0.741.

Conclusions

The outcome of this study shows that BMI and the overall assessment of the health declaration were the dominant variables to discriminate between applicants for life-insurance with and without at least 25 percent extra mortality. The variable insured capital set by insurers as factor for additional medical testing could not be established in this study population. The indication for additional medical testing at underwriting life-insurance can possibly be done on limited variables instead of the obligatory medical testing based on age and the amount of insured capital.     

Genetic discrimination in insurance and employment

The results of the Human Genome project will eventually have a great impact on medicine. However, the expansion of genetic testing due to these results exacerbates ethical, legal, and economic problems related to the project even today. Virtually free access to the data of testing would present an encroachment on personal freedom, since it may lead to discrimination based on genetic characteristics, i.e., genetic discrimination. Examples of this discrimination are already known; they include unsubstantiated refusals to employ carriers of certain alleles and denials of life or health insurance coverage and the ability to adopt a child. The use of genetic information in the insurance and employment fields is of primary concern due to its economic importance. Consumers consider genetic discrimination in these areas to be intolerable moral and social injustice. Genetic discrimination may eventually lead to the formation of a class of people who cannot buy an insurance policy, and, in the employment field, rejection of persons with "undesirable" genes infringes on citizens' rights to equal opportunity. However, selection for genetic characteristics in employment is justified if these characteristics determine sensitivity to occupational hazards.     

Streitkultur and the governance of genetic testing and insurance in Germany

Rapid developments in genetic testing have given rise to fundamental ethical, legal, and social questions that need to be dealt with in society. Results of genetic tests may be of interest to third parties such as private insurance companies, leading to fears of genetic discrimination. In Germany, the Government adopted the Genetic Diagnosis Act (Gendiagnostikgesetz, GenDG) in 2009 to protect people from, inter alia, genetic discrimination in obtaining life or health insurance. Given the sensitivity of the topic, this legislation was continually revised between 2001 and 2009. In this article, we reconstruct the process of formulating the GenDG with regard to genetics and insurance. The article begins with the parliamentary Enquete Commission in 2000 to develop a strategy and recommendations for the governance of genetic diagnostics, and analyzes how these recommendations were applied during the legislative process. We demonstrate that the legislative process of GenDG was largely determined by conventional methods of governance, rather than Streitkultur called for by the Enquete Commission in 2002. We conclude that though Streitkultur was defined as a mechanism to develop a robust approach to the governance of genetic diagnostics, it failed to influence a crucial element in genetic testing and insurance; namely, to fully protect insurees from genetic discrimination.     

Mutuality and solidarity: assessing risks and sharing losses.

Mutuality is the principle of private, commercial insurance; individuals enter the pool for sharing losses, and pay according to the best estimate of the risk they bring with them. Solidarity is the sharing of losses with payment according to some other scheme; this is the principle of state social insurance; essential features of solidarity are comprehensiveness and compulsion. Private insurance is subject to the uberrima fides principle, or utmost good faith; each side declares all it knows about the risk. The Disability Discrimination Act requires insurers to justify disability discrimination on the basis of relevant information, acturial, statistical or medical, on which it is reasonable to rely. It could be very damaging to private insurance to abandon uberrima fides. However, although some genetic information is clearly useful to underwriters, other information may be so general as to be of little use. The way in which mortality rates are assessed is also explained.     

Civilian and military genetics: nondiscrimination policy in a post-GINA world

Evidence is emerging of a growing societal consensus about appropriate and inappropriate uses of genetic information. The Genetic Information Nondiscrimination Act of 2008 provides new legal protections to Americans by prohibiting the discriminatory use of genetic information by health insurers and employers. Additionally, the United States military recently created new policies for fair use of genetic information in the determination of benefits for servicemen and servicewomen leaving military service. Although critical issues remain, such as the potential for genetic information to be used to deny people other forms of insurance, and how the military will use genetic medicine overall, significant progress has been made.     

Weather indices for designing micro-insurance products for small-holder farmers in the tropics

Agriculture is inherently risky. Drought is a particularly troublesome hazard that has a documented adverse impact on agricultural development. A long history of decision-support tools have been developed to try and help farmers or policy makers manage risk. We offer site-specific drought insurance methodology as a significant addition to this process. Drought insurance works by encapsulating the best available scientific estimate of drought probability and severity at a site within a single number- the insurance premium, which is offered by insurers to insurable parties in a transparent risk-sharing agreement. The proposed method is demonstrated in a case study for dry beans in Nicaragua.     

Voluntary disclosure of BRCA1 mutation test results

This study assessed the probability that individuals tested for a BRCA1 gene mutation share their test results with family members, co-workers, and insurers. Members of a large kindred known to be at-risk for carrying a BRCA1 gene mutation were tested and they learned their results from a genetic counselor. During a follow-up interview, 4 months later, subjects were asked with whom they had shared their results. Respondents were most likely to have communicated results to family members, followed by co-workers, and insurers. Carrier status affected their willingness to disclose results to insurers. High rates of disclosure to family members should promote awareness of hereditary cancer risk. Selective disclosure to co-workers and insurers may promote information asymmetries that could affect employment and insurance markets.     

The likely financial effects on individuals,industry and commerce of the use of genetic information.

In this paper I look at the financial implications of genetic testing, particularly in the employment and pensions fields. I have generally not covered life insurance, as that is covered in other papers in this Discussion Meeting. However, the issues are similar, although the emphasis is different. Inevitably there is an element of speculation involved; genetic testing is in its infancy and so we cannot predict either what information we will be able to obtain through genetic testing, nor the uses that may be devised for this information.     

'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?     

Dietary factors in the fall in coronary heart disease mortality.

The role of dietary change in the fall in heart disease mortality has been hotly debated. Three countries, Australia, USA and UK with equal 'care' and sophistication of surgical techniques have shown different timing in the beginning of the decline of this 'epidemic'; around the mid 1960s in the first two countries, but not until the late 1970s for the UK. The cause of this difference may be the changing food habits of their populations. Using food disappearance data, apparent consumption of butter and margarine show opposite trends (butter down and margarine up) predating the decline in mortality in both the USA and Australia by at least 7 years and also in the UK, but at a later time, (about 1970). Changes in adipose tissue linoleate, a marker for polyunsaturated fat intake, support this indirect evidence, with depot levels rising in the USA from the 1960s and 10 years later in the UK. Other evidence support the view of decreasing saturated fat intake and increasing polyunsaturated intake prior to 1960 in the USA. Although many factors must contribute to the decline in mortality from CHD, change in dietary P/S ratio would seem to be the major dietary contributor.     

Earthquake Insurance and Earthquake Risk Management

The Wenchuan earthquake is the largest devastating earthquake striking China since the 1976 Tangshan earthquake. In this catastrophe, loss payments were mainly from the government and public endowment. The insurance industry is expected to take more responsibility in the future, since earthquake insurance is one of the most effective and equitable instruments to disperse earthquake losses. In this article, earthquake risk management and the development of earthquake insurance in China are reviewed. Earthquake insurance is suggested as an instrument in earthquake risk management, where the premium rate of earthquake insurance is a key factor that needs to be determined reasonably. Seismic hazard is analyzed for the Wenchuan earthquake-stricken area, and is combined with primary loss estimation to construct the exceeding probability curve. Earthquake insurance premium rates are calculated for buildings in the area, including RC (Reinforced Concrete), frame, and brick, corresponding to two kinds of insurance deductible.