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10.6 Unit Summary and Review

Key Takeaways

Genomic healthcare and research raise numerous ethical, legal, and social issues, such as privacy and confidentiality, informed consent, genetic discrimination, and the implications of gene editing and biobanking. Addressing these concerns requires careful consideration of justice, equity, and access to ensure ethical and fair practices. Protections like Canada’s Genetic Non-Discrimination Act (GNDA) aim to safeguard against misuse of genetic data.The history of eugenics highlights its scientifically flawed and discriminatory roots, which have caused widespread harm through practices like forced sterilization, segregation, and social exclusion. Eugenics gained global traction in the 20th century, driven by racist, ableist, and colonial ideologies, influencing policies in countries such as Nazi Germany, the United States, Canada, and beyond. While the most infamous applications include Nazi racial policies and sterilizations targeting marginalized groups, eugenics also shaped immigration and public health policies in the U.S. and Canada, with Indigenous populations disproportionately affected. Modern concerns center on the potential for new genomic technologies to revive eugenic-like practices, emphasizing the need for ethical vigilance in genomics research and healthcare

Population descriptors, such as race, ethnicity, skin colour, and genetic ancestry, are essential yet complex tools in genomics and healthcare research. Historically, their misuse has justified eugenics through the practice of scientific racism, and marginalized groups, contributing to health disparities and social inequities. The National Academies of Sciences, Engineering, and Medicine (NASEM) has issued recommendations to transform how these descriptors are applied in research, emphasizing the importance of understanding their distinctions and implications.

Descriptors like race and ethnicity are social constructs, often conflated with genetic ancestry, a biological measure based on inherited DNA. While genetic ancestry provides insights into human migration and variation, most genetic differences occur within populations rather than between them. Misinterpretation of these terms can reinforce stereotypes and inequities. Effective use of population descriptors requires researchers and healthcare providers to consider their relevance and limitations, acknowledging their social, historical, and scientific contexts. Greater education and precision in their application are needed to ensure ethical and equitable practices in research and healthcare.

The Canadian Nurses Association (CNA) Code of Ethics provides a foundational framework to guide nurses in navigating ethical challenges, including those related to equity, culturally safe care, and social determinants of health. The integration of principles from both the CNA and American Nurses Association (ANA) Codes of Ethics emphasizes the ethical responsibilities of nurses in informed consent, patient advocacy, education, and addressing disparities in access to genetic services, which are critical to ensuring equitable and patient-centered care in the genomic era.

Resource

Dordunoo, D., Villeneuve, M., Hamza, A., Guest, T., Etowa, J., Bourque Bearskin, M. L., Magassa, Y., Markin, M., Bosco, C., Song, C., Hubert, J., Wonsiak, T., & Bailey, C.  (2024, June). Racism and discrimination among nurses in Canada and the impacts of the COVID-19 Pandemic: A scoping review. Canadian Nurses Association. https://www.casn.ca/wp-content/uploads/2024/07/CNA_Racism_Discrimation_Nurses_E.pdf 

Additional Optional Readings

  1. Allen D. (2018). Genetic testing: How genetics and genomics can affect healthcare disparities. Clinical Journal of Oncology Nursing, 22(1), 116–118. https://doi.org/10.1188/18.CJON.116-118
  2. Beamer L. C. (2017). Ethics and Genetics: Examining a crossroads in nursing through a case study. Clinical Journal of Oncology Nursing, 21(6), 730–737. https://doi.org/10.1188/17.CJON.730-737
  3. Black, K. A., Rich, R., & Felske-Durksen, C.  (2021). Forced and coerced sterilization of Indigenous Peoples: Considerations for health care providers. Journal of Obstetrics and Gynaecology Canada, 43(9), 1090 – 1093. https://doi.org/10.1016/j.jogc.2021.04.006 
  4. Braverman, G., Shapiro, Z. E., & Bernstein, J. A. (2018). Ethical issues in contemporary clinical genetics. Mayo Clinic proceedings. Innovations, Quality & Outcomes, 2(2), 81–90. https://doi.org/10.1016/j.mayocpiqo.2018.03.005
  5. Brown, J. (2023). The nurse’s role in genomic medicine navigating ethical and legal considerations. Journal of Advanced Practices in Nursing, 8(6), 1-2. https://www.hilarispublisher.com/open-access/the-nurses-role-in-genomic-medicine-navigating-ethical-and-legal-considerations.pdf
  6. Feero, W., Steiner, R. D., Slavotinek, A., Faial, T., Bamshad, M. J., Austin, J., Korf, B. R., Flanagin, A., & Bibbins-Domingo. (2024). Guidance on the use of race, ethnicity, and geographic origin as proxies for genetic ancestry groups in biomedical publications. The American Journal of Human Genetics, 111(4), 621 – 623. https://doi.org/10.1016/j.ajhg.2024.03.003
  7. 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
  8. Hammer M. J. (2019). Beyond the helix: Ethical, legal, and social implications in genomics. Seminars in Oncology Nursing, 35(1), 93–106. https://doi.org/10.1016/j.soncn.2018.12.007
  9. Katapodi, M. C., Pedrazzani, C., Barnoy, S., Dagan, E., Fluri, M., Jones, T., Kim, S., Underhill-Blazey, M. L., Uveges, M. K., & Dwyer, A. A. (2024). ACCESS: an empirically-based framework developed by the International Nursing CASCADE Consortium to address genomic disparities through the nursing workforce. Frontiers in Genetics, 14, 1337366. https://doi.org/10.3389/fgene.2023.1337366
  10. Khoury, M. J., Bowen, S., Dotson, W. D., Drzymalla, E., Green, R. F., Goldstein, R., Kolor, K., Liburd, L. C., Sperling, L. S., & Bunnell, R. (2022). Health equity in the implementation of genomics and precision medicine: A public health imperative. Genetics in Medicine, 24(8), 1630–1639. https://doi.org/10.1016/j.gim.2022.04.009
  11. Limoges, J., Chiu, P., Dordunoo, D., Puddester, R., Pike, A., Wonsiak, T., Zakher, B., Carlsson, L., & Mussell, J. (2024). Nursing strategies to address health disparities in genomics-informed care: A scoping review. JBI Evidence Synthesis, 22(11), 2267-2312. https://doi.org/10.11124/JBIES-24-00009
  12. Quinones, J. & Lajka, A. (2017). “What kind of society do you want to live in?”: Inside the country where Down syndrome is disappearing. CBS News. https://www.cbsnews.com/news/down-syndrome-iceland/ ​
  13. Thomas, G. M. & Katz Rothman, B. (2016). Keeping the backdoor of eugenics ajar: Disability and future prenatal screening. AMA Journal of Ethics, 18(4), 406-415. https://journalofethics.ama-assn.org/article/keeping-backdoor-eugenics-ajar-disability-and-future-prenatal-screening/2016-04

Attribution & References

Key takeaways generated using ChatGPT. Prompt: “summarize this text in a few sentences, ignoring images, captions, citations and web references.” The output was then edited by Andrea Gretchev.

References

ChatGPT: OpenAI. (2024). ChatGPT (Version 4.0) [Large language model]. https://openai.com

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Precision Healthcare: Genomics-Informed Nursing Copyright © 2025 by Andrea Gretchev, RN, MN, CCNE is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License, except where otherwise noted.

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