Catherine Hammack-Aviran, MA, JD - Vanderbilt University
ELSIconversations - April 2, 2021
Direct-to-consumer (DTC) genetic testing is transforming how people view their individual, familial, and community identities and relationships, particularly when used to discover ancestral origin and biological relationships. Narratives about who one is and where one comes from often include secrets, omissions, and inaccuracies. The expansion of DTC genetic testing has dramatically advanced our ability to learn more about ancestry and kinship, creating opportunities while raising new ethical, legal, and social issues. Within the Genetic Privacy and Identity in Community Settings (GetPreCiSe) NIH Center of Excellence in Ethics Research, we conducted empirical research on public perspectives on DTC genetic testing. In six focus groups of individuals who had heard of but not undertaken such testing, we explored participants’ motivations to pursue or decline DTC genetic testing, their overall likelihood of having DTC genetic testing generally as well as to learn about their specific ancestry and kinship, respectively, and the factors they consider in making decisions. Specifically, participants discussed the meaning of ancestry information for their self-perception and identity and the potential effects of unexpected ancestry results. They also reflected on the meaning of biological relatedness in familial relationships, the potential effects of unexpected kinship results, and the possibilities of receiving and initiating contact with a previously-unknown relative. We will present key research findings illuminating the range of considerations of, and potential effects on, individuals, families, and communities of decisions relating to DTC ancestry and kinship testing and their broader implications for shaping policy about genetic privacy and identity.
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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 - 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 - Developing Pathways for Community-led Research with Big Data: A Content Analysis of Stakeholder Interviews

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 - Human Germline Genome Editing and the Identity Politics of Genetic Disability

ELSIconversations Series 1 - Winter/Spring 2021 - Racial and Ethnic Classification in the Clinic: Is it Just?

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
