Ben Wills - The Hastings Center
ELSIconversations - March 19, 2021
Background: In 2016, the National Institutes of Health (NIH) solicited public comments regarding a proposal to cease funding certain human-animal chimera research. The NIH proposed expanding existing funding prohibitions to include research that a) breeds animals where human cells could contribute to the germline, or b) introduces human pluripotent stem cells into pre-blastocyst non-human primate embryos. Comments were also solicited about the types of research a proposed steering committee should guide, including research where human cells could substantially contribute to or functionally modify an animal’s brain.
Objectives: We sought to identify the issues and concerns commenters raised about human-animal chimera research and the degree to which they engaged with the proposed rule changes.
Methods: We undertook an inductive-deductive content analysis of a random sample (N=2,126) of 21,263 comments. Findings The vast majority of comments strongly opposed human-animal chimera research writ large, without referring to the proposed rule changes. They voiced concerns about the use of human embryos, taxpayer funding of objectionable research, species boundaries, scientific hubris, and animal welfare, among others. Many largely-identical letters suggested an organized submission campaign.
Conclusion: The NIH’s highly technical call for public comment may have contributed to confusion about the agency’s proposal, influencing who responded and the concerns that arose. To achieve broader public input, policy proposals should be written for a lay audience and mechanisms for input should be made more accessible. We compare this process to the UK’s Human Fertilisation and Embryology Authority consultation process on chimeras to suggest alternate approaches.
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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 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 - 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 - 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 - 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

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?

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
