Global trends on fears and concerns of genetic discrimination: a systematic literature review

Abstract

Since the 1990s, developments in the field of genetics have led to many questions on the use and possible misuse of genetic information. 'Genetic discrimination' has been defined as the differential treatment of asymptomatic individuals or their relatives on the basis of their real or assumed genetic characteristics. Despite the public policy attention around genetic discrimination, there is currently still much confusion surrounding this phenomenon. On the one hand, there is little evidence of the occurrence of genetic discrimination. On the other hand, it appears that people remain concerned about this theme, and this fear influences their health and life choices. This article makes use of a systematic literature review to investigate what is already known about the nature, extent and background of these fears and concerns. The 42 included studies have found considerable levels of concerns about genetic discrimination. Concerns dominate in insurance contexts and within personal interactions. The extent of concerns appears to vary depending on the type of genetic illness. Furthermore, installed laws prohibiting genetic discrimination do not seem to alleviate existing fears. This raises important questions as to the origins of these fears. Based on the findings, recommendations for future research are made. First, research on the background of fears is needed. Second, future research needs to assess more fully all different forms (for example, direct and indirect) of genetic discrimination. Thirdly, it has to be studied whether genetic discrimination is a form of discrimination that is distinguishable from discrimination based on an illness or disability. Finally, a last element that should be addressed in future research is the most recent developments in research on genomics, such as next-generation sequencing or genome-wide association studies.

Public Views on Genetics and Genetic Testing: A Survey of the General Public in Belgium

“…Some of the disadvantages of GT include psychological distress associated with the procedure, potential harm due to unnecessary medical interventions where tests results are inaccurate (Botoseneanu et al, 2011), and the possibility of discrimination against individuals with particular genetic predispositions (Wauters and Van Hoyweghen, 2016).…”

Genetics and Insurance in Australia: Concerns around a Self-Regulated Industry

“…Fear around the insurance implications of genetic test results, whether perceived or real, continues to be one of the most commonly stated concerns preventing the uptake of clinical genetic testing in Australia, especially for predictive testing in families [10] . Insurance implications are also a concern for many individuals considering participating in medical research involving return of genetic findings, and can be a significant reason for declining to participate [12][13][14][15] .…”

Ethics Hype?

“…20 I want to emphasize that I am not suggesting that academics, their public relations departments, or others are necessarily consciously hyping ELSI scholarship. It may lead to poor policy decisions and the wasting of policy-making resources (as in the crafting of unnecessary legislation), a less-than-ideal allocation of ELSI research resources (such as funding inappropriately hyped areas of inquiry), and a misinformed public.…”