'Genetic discrimination: emerging ethical challenges in the context
of advancing technology' by Carolyn Riley Chapman, Kripa Sanjay Mehta, Brendan Parent and Arthur L. Caplan in (2019)
Journal of Law and the Biosciences 1–23 comments
Genetic testing is becoming more widespread, and its capabilities and pre- dictive power are growing. In this paper, we evaluate the ethical justifi- cations for and strength of the US legal framework that aims to protect patients, research participants, and consumers from genetic discrimination in employment and health insurance settings in the context of advanc- ing genetic technology. The Genetic Information Nondiscrimination Act (GINA) and other laws prohibit genetic and other health-related discrim ination in the United States, but these laws have significant limitations, and some provisions are under threat. If accuracy and predictive power increase, specific instances of use of genetic information by employers may indeed become ethically justifiable; however, any changes to laws would need to be adopted cautiously, if at all, given that people have consented to genetic testing with the expectation that there would be no genetic discrimination in employment or health insurance settings. However, if our society values access to healthcare for both the healthy and the sick, we should uphold strict and broad prohibitions against genetic and health-related discrimination in the context of health insurance, including employer-based health insurance. This is an extremely important but often overlooked consideration in the current US debate on healthcare.
The authors argue
The international focus on and investment in genetic research will undoubtedly
increase the ability to use genetic testing to predict many different individual
characteristics and phenotypes, including the propensity for disease. According to the
US National Institutes of Health (NIH), precision medicine is ‘an emerging approach
for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person’. Many rare diseases are caused by a single gene defect. More common diseases such as diabetes and heart disease are polygenic and complex in nature, but scientists are identifying genetic factors that predict the risks of these diseases with greater precision and accuracy. Other genetic research is aimed at strengthening the predictive power of genome-wide polygenic scores for specific measures of intelligence (and/or educational attainment) and athleticism. Although the accuracy and predictive power of polygenic risk scores still need improvement, it’s clear that many scientists are working to address this challenge. Regardless of whether selecting embryos for higher IQ is in the realm of possibility, genetic testing is enabling increasingly accurate predictions about human characteristics.
The Genetic Information Nondiscrimination Act (GINA) was enacted in 2008. In large part, the law was intended to allow patients to take advantage of genetic testing in clinical and research settings without fearing genetic discrimination. With knowledge about genotype/phenotype associations continuing to grow, it is worth reexamining the ethical justifications for prohibitions against genetic discrimination in employment and health insurance settings. Are our laws and policies sufficient, or will they need to evolve? With increasing accuracy of genetic testing, would it ever be appropriate to use genetic information to discriminate against or classify individuals in employment or health insurance settings? Our analysis must acknowledge that GINA has created an ethical obligation in its own right: Consumers, patients, and research participants have consented to genetic testing with the expectation that the results cannot be used in employment or health insurance settings.
We divide this paper into three parts. In Part I, we analyze ethical issues related to the use of genetic information by employers and health insurers. We also discuss how these two spheres overlap since many employers provide health insurance for employees. In Part II, we outline the central policies that collectively prohibit discrimination based on genetic information in the United States in employment and insurance settings and discuss the limitations of these protections. We discuss how laws that prohibit employ- ment and health insurance discrimination based on health status are also important in the context of genetic conditions, when and if genetic disease becomes symptomatic. In Part III, we consider current and future challenges to the legal framework that prohibits genetic discrimination in employment and health insurance settings and make recommendations based on our ethical analysis. In the future, employers might justifiably argue that genetic information is relevant in specific employment decisions, and carveouts to GINA may indeed be warranted in narrow circumstances. However, if our society values equal access to healthcare, we must preserve broad and strict prohibitions against genetic and other health status discrimination in health insurance settings. The US health insurance system, which relies on for-profit insurers as well as employers, may become increasingly ethically problematic over time, if our predictive capabilities increase and insurance providers push back against protections in GINA and the Affordable Care Act (ACA).
