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.     

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.     

Ethical aspects of genetic testing.

No research study or significant medical treatment can be done involving patients without their informed consent. In workplaces and environmental settings, individuals are often exposed to mutagenic or carcinogenic substances, usually without their knowledge, and not with their informed consent. Such exposures can lead to evermore easily documentable genetic changes. As genetic testing becomes more widespread, there are significant ethical implications regarding employment, insurance coverage, and confidentiality regarding medical information. With an increased ability to detect genetic changes, or 'unfavorable' genetic polymorphisms, this information should not be used to deny employment or increase insurance rates. Rather, such information should be used to increasingly provide appropriately safe workplaces, and place workers in less hazardous settings.     

Laboratory policies and practices for the genetic testing of children: a survey of the Helix network.

In order to discover whether laboratories have policies regarding the testing of unaffected children, we surveyed all laboratories registered with Helix, a national net-work of DNA diagnostic laboratories. Of 186 laboratories asked to respond anonymously to a four-page questionnaire, 156 (84%) replied. A screening question removed 51 laboratories that provided no clinical services. Of the remaining 105, 92% said that their requisition forms asked the person's age. Substantial minorities had policies for the testing of minors for late-onset disorders (46%), for carrier status for recessive disorders (33%), or for disorders for which the test offers no medical benefit within 3 years (33%). Most laboratories are responsive to parental requests. For 12 of 13 late-onset disorders, the majority of laboratories that offered testing had had requests to test children. The majority had tested healthy children, <12 years of age, for eight disorders. Approximately 22% had tested children, <12 years of age, for Huntington disease. Majorities had received requests to test healthy children for carrier status for 10 of 15 recessive or X-linked disorders and had tested children, <12 years of age, for 6 of these disorders, including cystic fibrosis, hemophilia A, fragile X syndrome, and Duchenne muscular dystrophy. Approximately 45% of the laboratories occasionally had provided tests directly to consumers. In view of the possibility that the harms of presymptomatic diagnoses of children sometimes may outweigh the benefits, our results suggest a need for consistent laboratory policies designed for the best interests of the child and the family.     

Genetic testing and insurance: opportunities and challenges for society.

The increased availability of genetic tests poses new challenges to society. Here, we address the wider implications of genetic testing, with an emphasis on the markets for insurance. It also considers issues such as confidentiality, patient autonomy and fear of discrimination and the doctor-patient relationship.     

Attitudes toward genetic testing among the general population and relatives of patients with a severe genetic disease: a survey from Finland.

In the present study we explore the attitudes of the Finnish population toward genetic testing by conducting a questionnaire study of a stratified sample of the population as well as of family members of patients with a severe hereditary disease, aspartylglucosaminuria (AGU). The questionnaire evaluated attitudes toward gene tests in general and also respondents' preparedness to undergo gene tests for predictive testing, carrier detection, prenatal diagnosis, and selective abortion, in theoretical situations. The results of the study indicate that both the Finnish population in general and family members of AGU patients have a favorable attitude toward genetic testing. However, a commonly expressed reason against testing was that test results might lead to discrimination in employment or insurance policies. Based on the responses, we predict that future genetic testing programs will most probably be met with a high acceptance rate by the Finnish population.     

Actuarial considerations on genetic testing.

In the UK the majority of life insurers employ relatively liberal underwriting standards so that people can easily gain access to life assurance cover. Up to 95% of applicants are accepted at standard terms. If genetic testing becomes widespread then the buying habits of the public may change. Proportionately more people with a predisposition to major types of disease may take life assurance cover while people with no predisposition may take proportionately less. A model is used to show the possible effect. However, the time-scales are long and the mortality of assured people is steadily improving. The change in buying habits may result in the rate of improvement slowing down. In the whole population, the improvement in mortality is likely to continue and could improve faster if widespread genetic testing results in earlier diagnosis and treatment. Life insurers would not call for genetic tests and need not see the results of previous tests except for very large sums assured. In the UK, life insurers are unlikely to change their underwriting standards, and are extremely unlikely to bring in basic premium rating systems that give discounts on the premium or penalty points according to peoples genetic profile. The implications of widespread genetic testing on medical insurance and some health insurance covers may be more extreme.     

Ethical boundaries in genetic testing.

The scarcity of resources that can be allocated to genetic testing will ultimately limit the number of diseases subjected to molecular analysis. Medical student David Allan, who claimed first prize in CMAJ''s 1995 Logie Medical Ethics Essay Contest, looks at the ethical principles that should guide decisions about genetic testing, and the importance of communicating these principles to patients and their families.     

A survey of physician attitudes and practices concerning cost-effectiveness in patient care

Objective To identify physicians'' views regarding cost-containment and cost-effectiveness and their attitudes and experience using cost-effectiveness in clinical decision making. Design A close-ended 30-item written survey. Subjects 1,000 randomly selected physicians whose practices currently encompass direct patient care and who work in the California counties of Sacramento, Yolo, Placer, Nevada, and El Dorado. Outcome measures Physician attitudes about the role of cost and cost-effectiveness in treatment decisions, perceived barriers to cost-effective medical practice, and response of physicians and patients if there are conflicts about treatment that physicians consider either not indicated or not cost-effective. Results Most physicians regard cost-effectiveness as an appropriate component of clinical decisions and think that only the treating physician and patient should decide what is cost-worthy. However, physicians are divided on whether they have a duty to offer medical interventions with remote chances of benefit regardless of cost, and they vary considerably in their interactions with patients when cost-effectiveness is an issue. Conclusion Although physicians in the Sacramento region accept cost-effectiveness as important and appropriate in clinical practice, there is little uniformity in how cost-effectiveness decisions are implemented.The rising cost and the equitable distribution of health care resources are important social and political issues. A major contributor to cost inflation is the enormous capacity of biomedical science to create new and costly medical interventions.^1,2 Whereas purchasers—primarily employers and government—resist increases in health care premiums and reimbursements, physicians, medical groups, and health plans face legal, regulatory, and social pressures to provide all care that is “medically necessary.”^3,4Reconciling the tension between finite resources and ever-increasing demands is not easy. One approach is for physicians to use cost-effectiveness as an explicit criterion when developing clinical policies applicable to broad populations or when considering treatment alternatives for individual patients.^5,6 Although using cost-effectiveness criteria to develop clinical policies (eg, drug formularies or practice guidelines) has long been considered an appropriate physician role,^7,8 limiting marginally beneficial and costly interventions for individual patients is controversial.^{9,10,11,12,13} The literature on the cost-effectiveness of medical interventions is growing, but little is known about how physicians incorporate cost-effectiveness decisions at the bedside.To explore the acceptability of explicitly incorporating cost-effectiveness into clinical and coverage decisions, a regional 15-member consortium (listed at the end of article) created the Visible Fairness project. Its goal is to develop recommendations that reflect consumer and provider values, interests, and concerns regarding cost-effectiveness. The first component of Visible Fairness was a written survey of local physicians seeking their views on 3 principal issues: cost containment and the role of physicians in providing cost-effective care, barriers to practicing cost-effective medicine, and experience with patients who insist on treatment that is viewed as not cost-effective.     

A survey of genetic polymorphisms in Sardinia

A sample of unrelated individuals coming from Sardinia has been typed for AB0, Rhesus, Kell, 6-PGD, G-6-PD, PGM₁, AK polymorphisms. The gene frequencies are compared with the published data from other Italian population samples. With regard to these polymorphisms a considerable heterogeneity appears among the Sardinians and the Italian of mainland populations. This work was partially supported by M.P.I. (40%, 1983) and Assessorato P.I. Regione Autonoma Sardegna and was presented at the 4^th Congress of the European Anthropology Association (Florence, Sept. 1984).     

Noninvasive preimplantation genetic testing in assisted reproductive technology: current state and future perspectives

Invasive genetic screening of pre-implantation embryos via biopsied trophectoderm (TE) cells has been in use for more than 20 years, while its benefits in selecting euploid embryos remain controversial. Recent advances in the ability to process embryonic cell-free DNA (cfDNA) from blastocoel fluid (BF) and spent culture media (SCM) of blastocysts in a manner similar to that of a biopsied TE sample provide a potential alternative holding great promise for obtaining cytogenetic information of the embryos without intrusive biopsy of traditional biopsy-based pre-implantation genetic testing (PGT). Several studies have reported even higher diagnostic accuracy in non-invasive PGT (ni-PGT) than conventional PGT. However, there are still several technical challenges to be overcome before ni-PGT can be accepted as a reliable genomic information source of embryo. In this review, we have summarized the emergence and current state of ni-PGT, and discussed our own perspectives on their limitations and future prospect. There is still a long way to go before truly wide clinical application of ni-PGT.