10.2 Genetic Discrimination

Ethical, Legal and Social issues

There are a multitude of ethical, legal, and social issues arising from genomic-informed healthcare and research. An entire textbook could be devoted to exploring these ethical issues. While some of these topics have been covered in previous units, as noted in the brackets beside each topic, this course cannot encompass all of them. This chapter intends to build on nursing students’ previous studies of legal and ethical issues in healthcare. Some of the ethical issues in genomics include:

• Returning genomic results (5.3, 8.4)
• Predictive testing of minors (5.3, 8.2, 12.4)
• Informed consent (5.3)
• Privacy and confidentiality (8.3)
• Individual vs relational autonomy and the right to know (12.3)
• Genetic discrimination (3.3)
• Data sharing and security (5.3, 13.2)
• Biobanking (5.3)
• Concerns about assistive reproductive technologies (8.3, 12.4, 13.2)
• Gene editing (13.2)
• Eugenics and scientific racism (10.3)
• Population descriptors (10.4)

This unit will specifically focus on genetic discrimination, the dark history of genetics and genomics (eugenics), ongoing scientific racism, and the preferred use of population descriptors. The final section will review implications for nursing, particularly in respect to the nursing Code of Ethics, professional and practice standards, and competencies. The lessons from this unit also apply to other healthcare areas beyond genomics and are rooted in the bioethical principles of autonomy, beneficence, non-maleficence, and justice that nurses learn about in their ethics courses. The Tri-council Policy Statement (TCPS2) was reviewed in chapter 5.3. Recall that chapter 13 of the TCPS2 provides guidance on conducting human genetic research and examines ethical issues in genetic research including biobanking, privacy and confidentiality, vulnerable populations (e.g. predictive testing of children), consent, returning genomic test results (e.g. incidental and secondary findings), and gene transfer.

Genetic Discrimination

Chapter 3.3 briefly explored how everyday discrimination happens through genetic discourse. The assigned reading for that chapter reviewed the problematic concepts of genetic determinism, essentialism, and reductionism which, when misunderstood or misused, can exacerbate health disparities and perpetuate prejudice. These concepts underlie scientific racism and eugenics due to the misbelief that certain people are advantaged over others due to their  ‘genetic endowment’ or ‘good genes’.

In certain cases, genetic information may be misused in ways that impact access to employment, goods, and services. In chapter 8.2, it was mentioned that the possibility of genetic discrimination in employment or insurance is a concern of genetic testing. An example of institutional genetic discrimination is when employers or insurance companies treat people differently based on genetic information that shows a predisposition to an inherited disorder. There are many other forms of individual genetic discrimination. For example, knowledge about carrier status for sickle cell trait is used to select or reject partners for marriage and childbearing. This can make those who carry the trait feel less-than, particularly in cultures where marriage is linked to social status. Fear of discrimination is a common concern among people considering genetic testing” (MedlinePlus, n.d.).

In 2017, parliament passed the Genetic Non-Discrimination Act (GNDA) into law to prevent institutional discrimination based on genetic test results by employers or insurance agencies. Under the GNDA,  companies cannot require genetic testing or deny services based on a refusal to obtain testing (Canadian Civil Liberties Association, 2018). Furthermore, a person’s genetic test results cannot be collected, used, or disclosed without written consent (Canadian Civil Liberties Association, 2018).

The protections afforded by the act protect individuals being denied goods and services, such as obtaining life or health insurance or entering into contracts, such as employment, based on genetic test results. The complete legislation can be viewed here. Nurses should be familiar with the legislation, as patients pursuing genetic testing will likely have questions about what happens to their genetic data, who can access it, and how it can be used. Alaire et al. (2021) found that many Canadian women lacked knowledge or were misinformed about the scope and content of the GNDA, with an average rate of 50.94% correct responses to their questionnaire. Dalpé et al. (2021) analyzed online discussion posts about the GNDA and found that in the forum about fears around the GNDA, 69% of the posts related to avoiding genetic testing.

Several countries have their own form of protection against genetic discrimination and Canada’s GNDA is one of the strongest, as it is enforced under the criminal code. Penalties for violation can include fines of up to $1 million dollars or five years imprisonment (Genetic Non-discrimination Act, 2017). However, there is some validity to concerns as there is evidence that some insurance companies have attempted to find loopholes in the legislation (Fernando et al., 2024). The GNDA is not all encompassing and, as genomic sciences advances, the limited frame used by the GNDA to define genetic testing will need to be amended to be more inclusive of other forms of genetic data.

Attribution & References

Except where otherwise noted, this section is adapted from

• Genetic Discrimination section written by Andrea Gretchev, CC BY-NC 4.0

References

Alarie, S., Hagan, J., Dalpé, G., Faraji, S., Mbuya-Bienge, C., Nabi, H., Pashayan, N., Brooks, J. D., Dorval, M., Chiquette, J., Eloy, L., Turgeon, A., Lambert-Côté, L., Paquette, J., Walker, M. J., Lapointe, J., Granados Moreno, P., Blackmore, K., Wolfson, M., . . . Joly, Y. (2021). 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. MDPI AG. https://doi.org/10.3390/jpm11080726

Canadian Civil Liberties Association. (2018, April 11). The genetic non-discrimination act: An overview. https://ccla.org/get-informed/talk-rights/the-genetic-non-discrimination-act-an-overview/

Dalpé, G., Pinkesz, M., Oliviero, E., Tolymbek, M., & Joly, Y. (2021). Genetic discrimination views in online discussion forums: Perspectives from Canadian forumites. Journal of genetic counseling, 30(6), 1613–1628. https://doi.org/10.1002/jgc4.1427

​Fernando, A., Kondrup, E., Cheung, K., Uberoi, D., & Joly, Y. (2024). Still using genetic data? A comparative review of Canadian life insurance application forms before and after the GNDA. FACETS, 9, 1-10. https://doi.org/10.1139/facets-2023-0101

Genetic Non-discrimination Act, S.C. 2017, c. 3. https://laws-lois.justice.gc.ca/PDF/2017_3.pdf

MedlinePlus. (n.d.). What is genetic discrimination?: MedlinePlus Genetics. https://medlineplus.gov/genetics/understanding/testing/discrimination/