Looking Beyond GINA: Policy Approaches to Address Genetic Discrimination

Abstract

Genetic discrimination (GD) is consistently associated with research and innovation in genetics. Over recent decades, countries around the world have attempted to address GD using various policy measures. In this article, we survey these approaches and provide a critical commentary on their advantages and disadvantages. Our examination begins with regions featuring extensive policy-making activities (North America and Europe), followed by regions with moderate policy-making activities (Australia, Asia, and South America) and regions with minimal policy-making activities (the Middle East and Africa). Our analysis then turns to emerging issues regarding genetic testing and GD, including the expansion of multiomics sciences and direct-to-consumer genetic tests outside the health context. We additionally survey the shortcomings of current normative approaches addressing GD. Finally, we conclude by highlighting the evolving nature of GD and the need for more innovative policy-making in this area. Expected final online publication date for the Annual Review of Genomics and Human Genetics, Volume 21 is August 31, 2020. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

DNA testing information on YouTube: Inadequate advice can mislead and harm the public

“…Nevertheless, information saved in databases could potentially be accessed or required to be disclosed and used for decision-making regarding life insurance, disability and long-term care insurance, and employment (Belisle-Pipon et al, 2019). Debate about how genetic information has been defined (Suter, 2018) has prompted a call for more advanced policy efforts in this area (Joly et al, 2020). In addition to misuse of information saved in databases, personal sharing of genetic information by consumers, family members, or friends on social media is another way that consumers can be exposed to discriminatory practices (Soo-Jin Lee & Borgelt, 2014).…”

Establishing the International Genetic Discrimination Observatory

“…Discrimination has been defined differently in diverse contexts, such as in law or private insurance, thus potentially explaining why individuals may have different perceptions, expectations and acceptance thresholds concerning this issue [4]. The plain meaning of genetic discrimination usually refers to treating an individual or a group unjustly or prejudicially on the basis of their genetic characteristics [5]. The extent and incidence rate of genetic discrimination remain subjects of debate [6,7], partly because of the difficulty in rigorously assessing these aspects.…”

Risk-Stratified Approach to Breast Cancer Screening in Canada: Women’s Knowledge of the Legislative Context and Concerns about Discrimination from Genetic and Other Predictive Health Data

“…GD generally refers to treating an individual or group unfairly or prejudicially based on their genetic characteristics [ 13 ]. While some earlier publications suggested that concerns about GD may be more common than actual occurrences [ 14 , 15 ], many authors have since argued that GD does occur, but is often underreported [ 16 , 17 , 18 ].…”

“…While some earlier publications suggested that concerns about GD may be more common than actual occurrences [ 14 , 15 ], many authors have since argued that GD does occur, but is often underreported [ 16 , 17 , 18 ]. Laws to prevent GD have been adopted in various countries (e.g., Genetic Non-Discrimination Act , Canada, Bundesrat Gesetz über genetische Untersuchungen bei Menschen , Germany, and Genetic Information Non-discrimination Act , United States) [ 13 ]. According to the literature, general awareness of policies surrounding GD is low [ 19 , 20 , 21 ].…”