Emily Bullis, MA and Anjali Shastri, PhD - 23andMe
ELSIconversations - February 26, 2021
Genetics research has been far from equitable in terms of engaging representative numbers of participants of non-European origins. 23andMe, with one of the largest research cohorts in the world, aims to increase the diversity of its genetic data and improve its analysis methods so that new discoveries and products benefit people of all racial and ethnic backgrounds. Through our Populations Collaborations Program, 23andMe partners with researchers who are engaging populations underrepresented in genetics research by: a) providing genotyping at no cost; b) ensuring that appropriate institutional and local ethics approvals are acquired; and, c) providing grants for community support and project-related activities. Since the launch of the Program, both collaborators and international organizations have noted a need for ethical accountability in genomics research involving underrepresented populations. In this presentation we will highlight specific ethical challenges we have encountered in our recent experiences and described in emerging ethical frameworks, including: obtaining community input, acquiring informed consent, tensions between broad and restrictive data access, the need to identify appropriate benefits and opportunities for local capacity building, and lastly, issues regarding the return of research results. Drawing from these topics, we will describe an ethical framework we are developing for 23andMe’s purposes, as well as our plan to extend this framework to a broader set of collaborations between academics and non-academics engaging underrepresented populations in genetics research.
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Videos in Series
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 - 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 - What does ‘respect for persons’ really mean? Practical considerations for demonstrating respect in genomics 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 - A Qualitative Study to Develop a Privacy and Nondiscrimination Best Practice Framework for Personalized Wellness Programs
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
ELSIconversations Series 1 - Winter/Spring 2021 - Human Germline Genome Editing and the Identity Politics of Genetic Disability
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?
