Natalie Pino, BA - National Human Genome Research Institute
ELSIconversations - March 26, 2021
The United States has a long history of institutionally classifying people by racial and ethnic (R/E) categories. The use of this information in healthcare settings is often unexamined, leaving questions about its overall purpose. Given the sensitive nature of R/E classification and its historical abuses, we assert that a formal ethical evaluation is needed to determine whether this practice is justified for the purpose of improving the delivery of healthcare, and if so, on what grounds. Following the framework established by Childress et al. (2002), which states that a justified public health practice is Effective, Proportional, Necessary, Least infringing, and Public Justified, we conducted a scoping review in PubMed to identify articles about the delivery of health care that involve R/E classification of study subjects (N=200), to determine whether there is evidence available to make an evaluation for each of Childress’s justificatory conditions. We found that collecting R/E can serve different purposes with unique benefits and harms that must be evaluated independently. While describing health statistics was the most popular function of R/E classification in studies in our literature review (N=121), there is a lack of clarity about the efficacy, proportionality, necessity, infringement, or public understanding of the practice. Overall, we found there is little evidence in the literature on which to base a formal ethical evaluation for the use of R/E classification in clinical settings. Further inquiry is required to generate evidence that would enable a formal evaluation of whether this ubiquitous practice is justified.
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ELSIconversations Series 1 - Winter/Spring 2021 - A Prospectus on Ethical Issues in the Context of Collaborations Between Academic and Non-academic Institutions on Genetics Research

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ELSIconversations Series 1 - Winter/Spring 2021 - Part 1. Ethical, Legal and Social Implications (ELSI) on the Frontiers of Precision Medicine Research at National Scale: Experiences of the NIH All of Us Research Program

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ELSIconversations Series 1 - Winter/Spring 2021 - Part 4. Assessing Access to Care in the Clinical Sequencing Evidence-Generating Research Consortium: Contexts and Challenges

ELSIconversations Series 1 - Winter/Spring 2021 - Defining the Critical Components of Informed Consent for Genetic Testing

ELSIconversations Series 1 - Winter/Spring 2021 - Part 3. Assessing Access to Care in the Clinical Sequencing Evidence-Generating Research Consortium: Contexts and Challenges

ELSIconversations Series 1 - Winter/Spring 2021 - Patient and family preferences on direct contact by a health system to invite cascade screening

ELSIconversations Series 1 - Winter/Spring 2021 - Part 2. Assessing Access to Care in the Clinical Sequencing Evidence-Generating Research Consortium: Contexts and Challenges

ELSIconversations Series 1 - Winter/Spring 2021 - Which Public, What Comments? An Analysis of Public Comments on Human-Animal Chimera Research Submitted to the National Institutes of Health

ELSIconversations Series 1 - Winter/Spring 2021 - Part 1. Assessing Access to Care in the Clinical Sequencing Evidence-Generating Research Consortium: Contexts and Challenges

ELSIconversations Series 1 - Winter/Spring 2021 - Using an implementation research tool to guide the implementation of non-invasive prenatal screening

ELSIconversations Series 1 - Winter/Spring 2021 - Direct-to-Consumer Genetic Testing: Public Perspectives and Considerations Regarding Ancestry and Kinship
