Predictive genetic testing poses fundamental questions for disability insurance, a crucial resource funding basic needs when disability prevents income from work. This article, from an NIH-funded project, presents the first indepth analysis of the challenging issues: Should disability insurers be permitted to consider genetics and exclude predicted disability? May disabilities with a recognized genetic basis be excluded from coverage as pre-existing conditions? How can we assure that private insurers writing individual and group policies, employers, and public insurers deal competently and (...) appropriately with genetic testing? (shrink)

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)

Among bioethicists and members of the public, genetics is often regarded as unique in its ethical challenges. As medical researchers and clinicians increasingly combine genetic information with a range of non-genetic information in the study and clinical management of patients with common diseases, the unique ethical challenges attributed to genetics must be re-examined. A process of genetic routinisation that will have implications for research and clinical ethics, as well as for public conceptions of genetic information, is constituted by the emergence (...) of new forms of genetic medicine, in which genetic information is interpreted in a multifactorial frame of reference. Although the integration of genetics in medical research and treatment may be a helpful corrective to the mistaken assumptions of genetic essentialism or determinism, the routinisation of genetics may have unintended consequences for the protection of genetic information, perceptions of non-genetic information and the loss of genetic research as a laboratory for exploring issues in research and clinical ethics. Consequently, new ethical challenges are presented by the increasing routinisation of genetic information in both biomedical and public spheres. (shrink)

As genomic science has evolved, so have policy and practice debates about how to describe and evaluate the ways in which genomic information is treated for individuals, institutions, and society. The term genetic exceptionalism, describing the concept that genetic information is special or unique, and specifically different from other kinds of medical information, has been utilized widely, but often counterproductively in these debates. We offer genomic contextualism as a new term to frame the characteristics of genomic science in the debates. (...) Using stasis theory to draw out the important connection between definitional issues and resulting policies, we argue that the framework of genomic contextualism is better suited to evaluating genomics and its policy-relevant features to arrive at more productive discussion and resolve policy debates. (shrink)

According to US law, insurance companies can lawfully differentiate individual health insurance premiums on the basis of non-genetic medical information, but not on the basis of genetic information. The article reviews the case for such genetic exceptionalism. First, I critically assess some standard justifications. Next, I scrutinize an argument appealing to the view that genetically based premium differentiation expresses that persons do not all merit equal concern and respect. In the final section, I argue that even if genetic exceptionalism is (...) unjustified, there is a forceful luck egalitarian argument against basing premiums on genetic risks, to wit, that this tends to make some individuals worse off than others as a result of the bad brute luck involved in having a genetically determined, above-average risk of developing health problems. (shrink)

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)

While the accumulation and increased circulation of genomic data have captured much attention over the past decade, privacy risks raised by the diversification and integration of omics have been la...