Informed by a search of the literature about the usage of genetic testing information (GTI) by insurance companies, this paper presents a practical ethical analysis of several distinct public policy options that might be used to govern or constrain GTI usage by insurance providers. As medical research advances and the extension to the Human Genome Project (2016, https://en.wikipedia.org/wiki/human_genome_project_-_write) moves to its fullness over the next decade, such research efforts will allow the full synthesis of human DNA to be connected to (...) predictive health dispositions. As testing costs fall, there will be ever more pressure for citizens to disclose GTI. Genetic testing information is integral to future medical care because it can be used to better assess individually tailored medical therapies as well as to allow a more informed risk analysis by the insurance industry, which in some countries such as the USA underwrites a majority of citizen medical expenses. As discussed in this examination, the revelation of people’s uniquely personal GTI to insurers has enormous societal implications. The major contribution of the paper is to offer policy makers and concerned citizens a nuanced articulation of the basic options to regulate GTI, with a special consideration for ethical fairness and equity. As genetic-based medicine blossoms and pressures to reduce healthcare costs increase, there will be an ever greater impetus for countries to revisit their genetic testing policies. Organizations and policy makers striving to create GTI oversights perceived to be both “fair and effective” need to be aware of the ethical perspectives discussed in this paper. (shrink)

We may create a catch-22 so that only people who are unlikely to need health insurance can afford it.... Genetic risk testing is important because it exposes the logic of a system that provides access to health insurance to those least likely to need it.

The Genetic Information Nondiscrimination Act of 2008 prohibits most forms of discrimination on the basis of genetic information in health insurance and employment. The findings cited as justification for the act, the almost universal political support for it, and much of the scholarly literature about genetic discrimination, all betray a confusion about what is really at issue. They imply that genetic discrimination is wrong mainly because of genetic exceptionalism: because some special feature of genetic information makes discrimination on the basis (...) thereof wrong. I suggest, to the contrary, that the best arguments against genetic discrimination assume that health care is an entitlement . I do this by examining two different exceptionalist arguments for genetic nondiscrimination, showing that they do not furnish good reasons for prohibiting genetic discrimination unless one supposes that health care is an entitlement. (shrink)

Genetic testing poses fundamental questions for insurance. Testing can predict a low probability of future illness and disability, which can help promote the insurability of individuals with a family history of genetic risk, but it can also invite insurers to reject applicants, increase premiums, exclude people with certain illnesses and disabilities, and otherwise adjust the underwriting processes for individuals with certain genotypes. In the workplace, these issues may cause employers who offer or pay for insurance to alter their hiring behavior, (...) either by selecting those with desirable genetic makeup or rejecting, dismissing, or reassigning those who carry an unwanted risk, ultimately threatening employability and the safety net that insurance is intended to provide. (shrink)

In the bioethical literature, discrimination in insurance on the basis of genetic risk factors detected by genetic testing has been defended and opposed on various ethical grounds. One important argument in favour of the practice is offered by those who believe that it is not possible to distinguish between genetic and non-genetic information, at least not for practical policy purposes such as insurance decision-making. According to the argument from indistinguishability, the use of genetic test information for insurance purposes should be (...) permitted, because genetic test information is no different from non-genetic medical information in any relevant respect, therefore it would be inconsistent to prohibit the former whilst permitting the latter. This paper discusses and defends this argument and suggests a new, more tenable foundation. (shrink)

The availability of new genetic testing technologies to identify individuals as at risk for a particular disease has inspired tremendous concern that individuals with gene mutations will soon be universally identified, for both insurance and employment purposes, as a genetic underclass. Scholarship in science and technology studies, however, suggests that understandings of genetic knowledge might be locally contingent, while research in comparative politics helps us understand how national context might play an important role in framing approaches to the regulation of (...) genetic information. What role does national context play in defining genetic risk and shaping approaches to the privacy of genetic information? Using data from interviews, document analysis, and ethnographic observation, the author follows debates among advocacy groups, insurers, and governments in the United States and Britain about the appropriate use of genetic information in insurance underwriting to understand how national context frames the definition of genetic risk as well as its regulation. (shrink)

The Human Genome Project has allowed researchers to gain new insights into the genetic causes of health and disease. With this knowledge comes the potential to develop new genetic tests that are capable of predicting the risk of disease or disability among presently healthy individuals. This information is potentially beneficial in that it may allow individuals to develop strategies to reduce their risk of illness and may allow health providers to recognize and treat the early stages of disease more effectively. (...) As knowledge about genetic contributions to disease continues to grow and genetic testing technology becomes more widespread, there is a risk that personal genetic information could be used in ways potentially concerning to consumers. Genetic testing technology could potentially be used to discriminate against individuals in terms of their ability to obtain health, life, and disability insurance. Decreased access to insurance, in turn, significantly hinders access to health care and income for oneself and/or for one's dependent. (shrink)

Arguments against the possible use of genetic test results in private health and life insurance predominantly refer to the problem of certain gene carriers failing to obtain affordable insurance cover. However, some moral intuitions speaking against this practice seem to be more fundamental than mere concerns about adverse distributional effects. In their perspective, the central ethical problem is not that some people might fail to get insurance cover because of their ‘bad genes’, but rather that some people would manage to (...) get insurance cover because of their ‘good genes’. This paper tries to highlight the ethical background of these intuitions. Their guiding idea appears to be that, by pointing to his favourable test results, a customer might make an attempt to ‘sell his body’. The rationale of this concept is developed and its applicability to the case at issue is critically investigated. The aim is to clarify an essential objection against the use of genetic information in private insurance which has not yet been openly addressed in the academic debate of the topic. (shrink)

Is information about a person's genome, whether derived from the analysis of DNA or otherwise, protected by the right to privacy? If it is, why and in what manner? It often appears that some people believe that the answer to this question is to be found in molecular genetics itself. They point to the rapid progress being made in basic and applied aspects of this field of biology; this progress has remarkably increased what is known about human genetics. Since knowledge (...) of a particular person's genetic makeup entails a potential intrusion into that person's most private realms and exposes him or her to dire results if revealed to others, they argue, the law needs to protect “genetic privacy.” There is nothing inherently wrong with this account, but it certainly presupposes that we know—and agree about—what it means to protect privacy and, indeed, what interests are implicated in the concept and why they matter. Rather than make this assumption, in this essay I first elaborate a concept of privacy before turning to the potential privacy implications that arise at the intersection of human genetics and the field of insurance. I argue that the core value here is self-determination broadly conceived—that control over one's genetic information may be important for achieving self-determination—but that at least in the context of contracts for life insurance, we should be reluctant to recognize “rights” that would permanently preclude the use of genetic data by insurers. (shrink)

In an era of increasing medical costs and cries for health care reform in the United States, the pharmaceutical industry has come under intense scrutiny. Ethical issues are inherent in the pharmaceutical marketplace, and there is a need to address the moral rights and responsibilities of drug manufacturers consumers, health care professionals, and governmental agents in the production, distribution, regulation, and use of these products. A dual market system protecting individual rights to access and autonomy without placing an undue strain (...) on societal resources would provide an adequate and equitable framework for an ethical pharmaceutical industry. (shrink)

Any humane society needs a just and compassionate way to care for those who are sick, and should be vigilant in identifying and eliminating barriers that frustrate efforts to adequately care for the sick. Some current insurance underwriting practices constitute effective barriers to access to healthcare and serve to diminish the place of freedom and justice in our healthcare system.

In the bioethical literature, discrimination in insurance on the basis of genetic risk factors detected by genetic testing has been defended and opposed on various ethical grounds. One important argument in favour of the practice is offered by those who believe that it is not possible to distinguish between genetic and non-genetic information, at least not for practical policy purposes such as insurance decision-making. According to the argument from indistinguishability, the use of genetic test information for insurance purposes should be (...) permitted, because genetic test information is no different from non-genetic medical information in any relevant respect, therefore it would be inconsistent to prohibit the former whilst permitting the latter. This paper discusses and defends this argument and suggests a new, more tenable foundation. (shrink)