10.1 Unit Overview
Learning Objectives
- Critically assess some of the ethical, legal, and social implications of genomics.
- Evaluate the historical context and origins of eugenics and scientific racism and relate this to contemporary healthcare practices and policies.
- Distinguish between race, ethnicity, and genetic ancestry as applied in biomedical contexts.
- Examine how historical misuse of population descriptors has contributed to health disparities and reinforced inequities in healthcare and genomic research.
Outline
Topics covered in this chapter include:
- Genetic discrimination
- Eugenics
- Scientific racism
- Population descriptors
- Nursing implications
Competencies Nurses will Develop in this Chapter
ANA (2023):
Identification:
- Identifies ethical, ethnic or ancestral, cultural, religious, legal, fiscal, and societal issues related to genomic information and technologies.
- Recognizes issues that undermine the rights of all clients for autonomous, informed genomic-related decision-making and voluntary action.
Provision of education, care, and support:
- Advocates for autonomous, informed genomic-related decision-making.
- Demonstrates in practice the importance of tailoring genomic information and services that are responsive to the unique attributes of every person.
NHS (2023):
Demonstrate effective communication in tailoring genomic information and services to the individual:
- recognizing factors (such as ethnicity, culture, religion, ethical values, developmental stage or language) that may influence the individual’s ability to use information and services.
Advocate for the rights of all individuals to make informed decisions and act voluntarily:
- understanding the importance of delivering genomic information and counselling fairly, accurately and without coercion or personal bias, to facilitate decision-making and manage expectations;
- recognizing that your values and the values of others may influence the care and support provided during decision-making, and that choices and actions may change over time;
- ensuring that the consent process is person centered; and
- promoting and supporting equitable access to genomic services.
Apply knowledge, understanding and context of genomic testing and information to underpin care and support for individuals and families prior to, during and following decision-making:
- incorporating awareness of the ethical, legal and social issues related to testing, recording, sharing and storage of genomic information and data; and
- incorporating awareness of the potential physical, emotional, psychological and social consequences of genomic information for individuals, family members and communities.
Key terminology
Ethnicity
Refers to a group of people with shared language, religion, customs, beliefs, heritage and history, even though such attributes are not always confined to a single ethnic group. Ethnicity may also refer to groups that are considered indigenous to an area. Ethnicity is not a biological characteristic (NHGRI, 2024).
Eugenics
Eugenics is a discredited belief that selective breeding for certain inherited human traits can improve the “fitness” of future generations. For eugenicists, “fitness” corresponded to a narrow view of humanity and society that developed directly from the ideologies and practices of racism, colonialism, ableism and imperialism.
Genetic ancestry
Genetic ancestry refers to information about the people that an individual is biologically descended from, including their genetic relationships. Genetic information can be combined with historical information to infer where an individual’s distant ancestors lived.
Genealogical ancestry
An individuals family origins and ancestral history established through records, family trees, and other forms of documentation tracing lineage and relationships (NHGRI, 2024, para. 10).
Population descriptors
Population descriptors are ways of describing or distinguishing people from each other based on perceived or actual differences. They capture the various ways in which people can differ from one another. A wide variety of population descriptors are used to describe groups of people in research, healthcare or society. Examples of population descriptors include race, ethnicity, genealogical ancestry, genetic ancestry, Indigenous, primary language spoken, nationality, geographic origin, sex at birth, gender identity, disability status and age. Each population descriptor captures a different aspect of a group or individual. One population descriptor is not enough to fully describe or distinguish any individual or group. Depending on the situation, some population descriptors may be more relevant than others (NHGRI, 2024).
Race
Race is a social construct used to group people. Race was constructed as a hierarchal human-grouping system, generating racial classifications to identify, distinguish and marginalize some groups across nations, regions and the world. Race divides human populations into groups often based on physical appearance, social factors and cultural backgrounds.
Reference populations
To determine genetic ancestry, researchers compare DNA variants in an individual to the frequency of those DNA variants in reference populations – groups of people from around the world who have provided samples of their DNA (NHGRI, 2024. para. 13).
Scientific racism
Scientific racism is the practice of using data derived from pseudoscience to support racial biases and other forms of discrimination. Leading scientists across scientific institutions in the 19th and early 20th centuries were proponents of such ideologies. By the mid-20th century, data derived from pseudo-science were widely disproven. However, evidence shows that the practice of scientific racism persists in science and research.
Attribution & References
ANA (2023) Nursing Competencies are © American Nurses Association. Reprinted with permission. All rights reserved. Seek permission before reusing this portion of the page.
Except where otherwise noted, this page is adapted from:
- Talking Glossary of Genomic and Genetic Terms, Courtesy of: National Human Genome Research institute (NGHRI), Public Domain with attribution.
References
American Nurses Association (ANA). (2023). Essentials of genomic nursing: Competencies and outcome indicators (3rd ed.). https://www.nursingworld.org/nurses-books/ana-books/ebook-essentials-of-genomic-nursing-competencies-/
National Human Genome Research Institute (NHGRI). (n.d.). Talking glossary of genetic and genomic terms. www.genome.gov
National Human Genome Research Institute (NHGRI). (2024, October 24). Explainer: Use of population descriptors in genomics. https://www.genome.gov/about-genomics/policy-issues/population-descriptors-in-genomics
