Genetic discrimination and health insurance: an urgent need for reform.
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In a study of the perceptions of 332 members of genetic support groups with one or more of 101 different genetic disorders in the family, it was found that as a result of a genetic disorder 25 percent of the respondents or affected family members believed they were refused life insurance, 22 percent believed they were refused health insurance, and 13 percent believed they were denied or let go from a job. Fear of genetic discrimination resulted in 9 percent of respondents or family members refusing to be tested for genetic conditions, 18 percent not revealing genetic information to insurers, and 17 percent not revealing information to employers. The level of perceived discrimination points to the need for more information to determine the extent and scope of the problem.
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Explore the source record for details and available documents.
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OBJECTIVES: To gather empirical evidence on any discrimination based on genetic information shown by the insurance industry in the United Kingdom and to assess how society is likely to handle future genetic information from tests for polygenic multifactorial conditions. DESIGN: Postal questionnaire survey. SUBJECTS: Sample (n=7000) of members from seven British support groups for families with genetic disorders and a representative sample (n=1033) of the general public who answered questions on applying for life insurance as part of an omnibus survey. MAIN OUTCOME MEASURES: Subjects were asked about their experiences with insurers, the medical profession, employers, and social services. Experiences with insurers are reported here. RESULTS: Altogether 33.4% of the study group had problems when applying for life insurance compared with 5% of applicants in the omnibus survey. Thirteen per cent of study respondents from subgroups who represented no adverse actuarial risk on genetic grounds reported that their treatment by insurers seemed to represent unjustified genetic discrimination. CONCLUSIONS: Life insurers may not be operating a consistent policy for assessing genetic information or acting in accord with the actuarial risks brought to them. The inconsistency suggests error rather than a corporate policy of discrimination based on genetic characteristics. Any future proposals for genetic testing for common or multifactorial disorders should be examined carefully.
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BACKGROUND AND AIMS: The majority of patients with inflammatory bowel disease (IBD) have a normal life expectancy and therefore should not be weighted when applying for life assurance. There is scant literature on this topic. In this study our aim was to document and compare the incidence of difficulties in application for life and medical insurance in a population based cohort of IBD patients and matched population controls. METHODS: A population based case control study of 1126 IBD patients and 1723 controls. Based on a detailed questionnaire, the frequency and type of difficulties encountered when applying for life and medical insurance in matched IBD and control populations were appraised. RESULTS: In comparison with controls, IBD patients had an 87-fold increased risk of encountering difficulties when applying for life assurance (odds ratio (OR) 87 (95% confidence interval (CI) 31-246)), with a heavily weighted premium being the most common problem. Patients of high educational status, with continuous disease activity, and who smoked had the highest odds of encountering such problems. Medical insurance difficulties were fivefold more common in IBD patients compared with controls (OR 5.4 (95% CI 2.3-13)) although no specific disease or patient characteristics were identified as associated with such difficulties. CONCLUSIONS: This is the first detailed case control study that has investigated insurance difficulties among IBD patients. Acquiring life and medical insurance constituted a major problem for IBD patients in this study. These results are likely to be more widely representative given that most insurance companies use international guidelines for risk assessment. In view of the recent advances in therapy and promising survival data on IBD patients, evidence based guidelines for risk assessment of IBD patients by insurance companies should be drawn up to prevent possible discriminatory practices.
STUDY OBJECTIVE: The impact of isolated gate-keeping on health care costs remains unclear. The aim of this study was to assess to what extent lower costs in a gate-keeping plan compared with a fee for service plan were attributable to more efficient resource management, or explained by risk selection. DESIGN: Year 2000 costs to the Swiss statutory sick funds and potentially relevant covariates were assessed retrospectively from beneficiaries participating in an observational study, their primary care physicians, and insurance companies. To adjust for case mix, two-part regression models of health care costs were fitted, consisting of logistic models of any costs occurring, and of generalised linear models of the amount of costs in persons with non-zero costs. Complementary data sources were used to identify selection effects. SETTING: A gate-keeping plan introduced in 1997 and a fee for service plan, in Aarau, Switzerland. PARTICIPANTS: Of each plan, 905 randomly selected adult beneficiaries were invited. The overall participation rate was 39%, but was unevenly distributed between plans. MAIN RESULTS: The characteristics of gate-keeping and fee for service beneficiaries were largely similar. Unadjusted total costs per person were Sw fr 231 (8%) lower in the gate-keeping group. After multivariate adjustment, the estimated cost savings achieved by replacing fee for service based health insurance with gate-keeping in the source population amounted to Sw fr 403-517 (15%-19%) per person. Some selection effects were detected but did not substantially influence this result. An impact of non-detected selection effects cannot be ruled out. CONCLUSIONS: This study hints at substantial cost savings through gate-keeping that are not attributable to mere risk selection.
Genetics and genetic testing raise key issues for insurance and employment. Governmental and public concern galvanised the British insurance industry into developing a code of practice. The history of the development of the code, issues of genetic discrimination, access to medical information, consent and the dangers of withholding information and the impact on the equity of pooled risk are explored. Proactive steps by the Association of British Insurers suggest that moral reflection not legislation is the way forward.
This paper surveys recent health care reform debates and empirical evidence regarding the potential role for risk adjusters in addressing the problem of competitive risk segmentation under capitated financing. We discuss features of health plan markets affecting risk selection, methodological considerations in measuring it, and alternative approaches to financial correction for risk differentials. The appropriate approach to assessing risk differences between health plans depends upon the nature of market risk selection allowed under a given reform scenario. Because per capita costs depend on a health plan's population risk, efficiency, and quality of service, risk adjustment will most strongly promote efficiency in environments with commensurately strong incentives for quality care.
This report summarises the controversy of genetic tests and insurance, with a focus on the UK situation during the past decade. UK experience provides insight for future strategies to help people with genetic disadvantages make insurance provision for themselves and their families. Non-disclosure of genetic test results (already carried out for clinical purposes) may not benefit people at risk of genetic disorders or with positive genetic tests. The pressure of geneticists over a decade to prevent disclosure to insurers may have masked opportunities to use insurance to provide help for people with genetic disadvantages. To seize the opportunities now, there must be collaboration, not conflict. Politicians, geneticists, social scientists and all elements of the insurance industry can contribute to wise solutions.
OBJECTIVE: This study used a national employee survey to test the hypothesis that symptomatic individuals in general, and individuals with depressive symptoms in particular, are disproportionately enrolled in fee-for-service health care plans as compared to health maintenance organizations (HMOs). METHOD: The study analyzed data from the 1993 Employee Health Care Value Survey, a questionnaire distributed to employees of three large corporations. The sample comprised 20,283 employees covering six U.S. geographic regions and 46 health plans. The authors used logistic regression to model the association between HMO enrollment and presence of physical and depressive symptoms, measured by subscales derived from the Medical Outcomes Study 36-item Short-Form Health Survey, adjusting for health, demographic, and insurance variables. RESULTS: In unadjusted models, enrollees in fee-for-service plans had higher rates of both depressive and physical symptoms than HMO enrollees. After adjustment for age alone or for age and other potential confounders, there was no difference in physical symptoms between plan types. However, individuals with high levels of depressive symptoms were 16% less likely to be enrolled in HMOs than in fee-for-service plans after adjustment for age, other demographic variables, physical health status, and insurance characteristics. CONCLUSIONS: This study provides evidence that symptomatic individuals are more likely to be enrolled in fee-for-service plans than in HMOs. While much of the effect for physical symptoms may be explained by differences in demographic variables, particularly age, the difference in depressive symptoms appears to be independent of those variables.
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Adverse selection is a potentially significant problem in the individual (nongroup) health insurance markets if states use regulations to restrict insurance companies' ability to select whom they will insure. In 1993, New Jersey implemented the Individual Health Coverage Program (IHCP), presenting an opportunity to test for adverse selection when insurers' ability to select enrollees is severely restricted. The authors collected socioeconomic, demographic, and health status data from a sample of 2,211 adults covered by IHCP policies and compared the IHCP enrollee characteristics with those of two control groups of New Jersey residents (uninsured adults and adults with employer group insurance). Adverse selection does not appear to have occurred against the IHCP. However, the IHCP premiums were not cheap, and the findings suggest that people who can afford to purchase individual insurance and do so are, on average, healthier than those who do not choose to enroll, probably because the latter cannot afford insurance.
BACKGROUND: Studies conducted in developed countries using economic models show that individual- and household- level variables are important determinants of health insurance ownership. There is however a dearth of such studies in sub-Saharan Africa. The objective of this study was to examine the relationship between health insurance ownership and the demographic, economic and educational characteristics of South African women. METHODS: The analysis was based on data from a cross-sectional national household sample derived from the South African Health Inequalities Survey (SANHIS). The study subjects consisted of 3,489 women, aged between 16 and 64 years. It was a non-interventional, qualitative response econometric study. The outcome measure was the probability of a respondent's ownership of a health insurance policy. RESULTS: The chi2 test for goodness of fit indicated satisfactory prediction of the estimated logit model. The coefficients of the covariates for area of residence, income, education, environment rating, age, smoking and marital status were positive, and all statistically significant at p < or = 0.05. Women who had standard 10 education and above (secondary), high incomes and lived in affluent provinces and permanent accommodations, had a higher likelihood of being insured. CONCLUSION: Poverty reduction programmes aimed at increasing women's incomes in poor provinces; improving living environment (e.g. potable water supplies, sanitation, electricity and housing) for women in urban informal settlements; enhancing women's access to education; reducing unemployment among women; and increasing effective coverage of family planning services, will empower South African women to reach a higher standard of living and in doing so increase their economic access to health insurance policies and the associated health services.
The politics of American health insurance is a struggle over which vision of distributive justice should govern: the solidarity principle or the logic of actuarial fairness. Actuarial fairness is central to American private health insurance. It is both an antiredistributive ideology and a method of organizing mutual aid by fragmenting communities into ever-smaller, more homogeneous groups, leading ultimately to the destruction of mutual aid. This fragmentation is accomplished by fostering in people a sense of their differences and their responsibility for themselves, rather than their commonalities and interdependence. Actuarial fairness developed as a business strategy for gaining market share. Medical underwriting, which is far more extensive than commonly known, is the information technology used for implementing actuarial fairness. Despite significant changes in the political context of health insurance which are leading toward restraints on underwriting, the logic of actuarial fairness is so deeply embedded in the structure of competitive markets in insurance and so deeply consonant with social divisions in American society that eradicating it will take more than any current reform proposals contemplate.