Stephanie Kraft, JD - University of Washington
ELSIconversations - March 5, 2021
Demonstrating respect for research participants is not only an ethical imperative but, if done effectively, it may support trusting relationships between research teams and participants. Respect for persons may be especially important for how researchers engage with individuals from historically underrepresented groups, who often have lower trust in research due to prior and ongoing discrimination and exclusion. Yet there is little known about how to demonstrate respect in genomics research, which may result in missed opportunities to improve diversity among participants. In this presentation, we will examine how participants from diverse backgrounds define ‘respect’ and what role it plays in their enrollment decisions; we will also offer practical considerations for genomics researchers to more effectively demonstrate respect. We conducted individual interviews (n=40) with participants in a translational genomics study of hereditary cancer risk among ethnically, socioeconomically, and linguistically diverse primary care patients. Four approaches were identified for research teams to meaningfully demonstrate respect: (1) minimize barriers to participation to support inclusion of individuals from diverse backgrounds; (2) train research staff to provide support and empathy to prospective participants; (3) provide clear expectations about the study, including its social value; and (4) clarify and protect prospective participants’ autonomy rights. In this presentation, we will describe the contours of these broad considerations and identify specific interventions, informed by stakeholder feedback, that have potential to better convey respect to participants. Through this work, we aim to offer concrete guidance for genomics researchers to improve engagement with individuals from groups historically underrepresented in research.
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Videos in Series

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

ELSIconversations Series 1 - Winter/Spring 2021 - Sexual and Gender Minorities’ Perspectives on Genetic Privacy and Identity in Research

ELSIconversations Series 1 - Winter/Spring 2021 - Part 2. 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

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

ELSIconversations Series 1 - Winter/Spring 2021 - Platform Heals? Ethical Issues in Direct-to-consumer Telepharmacies

ELSIconversations Series 1 - Winter/Spring 2021 - A Qualitative Study to Develop a Privacy and Nondiscrimination Best Practice Framework for Personalized Wellness Programs

ELSIconversations Series 1 - Winter/Spring 2021 - Developing Pathways for Community-led Research with Big Data: A Content Analysis of Stakeholder Interviews

ELSIconversations Series 1 - Winter/Spring 2021 - When Dogs Play Cards: Interviews with Scientists, Researchers, and Oversight Committee Members on Ethical Guidelines for Human-Animal Chimera Research

ELSIconversations Series 1 - Winter/Spring 2021 - Democratic approaches to precision medicine and genetics research: comparing inclusiveness and effectiveness of PPI practices to the pursuit of the public good

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 - Racial and Ethnic Classification in the Clinic: Is it Just?

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 - Defining the Critical Components of Informed Consent for Genetic Testing

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 - Patient and family preferences on direct contact by a health system to invite cascade screening

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 - 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 - 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
