Organizational and Cultural Dynamics in Genomics Companies: Industry Engagement in Navigating Social and Ethical Issues

基因组公司的组织和文化动态：行业参与解决社会和道德问题

• 批准号: 10542816
• 负责人: Alexis Walker
• 金额: $ 24.9万
• 依托单位: COLUMBIA UNIVERSITY HEALTH SCIENCES
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-01-12 至 2024-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10542816
• 关键词: Address; Agreement; American; Area; Attention; Award; Back; Bioethics; Bioethics Consultants; Biotechnology; Boston; Businesses; California; Case Study; Comparative Study; Complement; Corporate Ethics; DNA; Decision Making; Delphi Study; Development; Development Plans; Diagnostic; Disparity; Empirical Research; Employee; Entrepreneurship; Equity; Ethical Issues; Ethics; Face; Genetic; Genomic approach; Genomics; Goals; Government; Health; Health Technology; India; Individual; Industrialization; Industry; Inequality; Intervention; Interview; Investigation; Justice; Licensing; Light; Link; Machine Learning; Marketing; Methods; Modeling; National Human Genome Research Institute; Pathway interactions; Patients; Perception; Persons; Phase; Play; Policies; Price; Privacy; Private Enterprises; Private Sector; Privatization; Process; Public Health; Questionnaires; Research; Research Priority; Research Project Grants; Role; Scholarship; Schools; Science; Shapes; Silicon; Site; Social Justice; Social Obligations; Social Responsibility; South Africa; South African; Strategic Planning; Structure; Technology; Therapeutic; Training; Training Activity; Training Programs; Universities; Work; career development; comparative; curative treatments; design; drug development; ethical, legal, and social implication; experience; gene therapy; genome editing; improved; individual response; innovation; insight; member; nebula; next generation sequencing; novel diagnostics; novel therapeutics; operation; population health; programs; research and development; social; theories; training project; Address; Agreement; American; Area; Attention; Award; Back; Bioethics; Bioethics Consultants; Biotechnology; Boston; Businesses; California; Case Study; Comparative Study; Complement; Corporate Ethics; DNA; Decision Making; Delphi Study; Development; Development Plans; Diagnostic; Disparity; Empirical Research; Employee; Entrepreneurship; Equity; Ethical Issues; Ethics; Face; Genetic; Genomic approach; Genomics; Goals; Government; Health; Health Technology; India; Individual; Industrialization; Industry; Inequality; Intervention; Interview; Investigation; Justice; Licensing; Light; Link; Machine Learning; Marketing; Methods; Modeling; National Human Genome Research Institute; Pathway interactions; Patients; Perception; Persons; Phase; Play; Policies; Price; Privacy; Private Enterprises; Private Sector; Privatization; Process; Public Health; Questionnaires; Research; Research Priority; Research Project Grants; Role; Scholarship; Schools; Science; Shapes; Silicon; Site; Social Justice; Social Obligations; Social Responsibility; South Africa; South African; Strategic Planning; Structure; Technology; Therapeutic; Training; Training Activity; Training Programs; Universities; Work; career development; comparative; curative treatments; design; drug development; ethical, legal, and social implication; experience; gene therapy; genome editing; improved; individual response; innovation; insight; member; nebula; next generation sequencing; novel diagnostics; novel therapeutics; operation; population health; programs; research and development; social; theories; training project

This K99/R00 Award is designed to generate scholarship and interventions to guide genomics companies towards more just practices. It does so through a five-year training and research project, which investigates perspectives from members of the genomics industry, and leverages them to inform normative analyses and identify feasible paths towards concrete change. The project addresses issues of price, access and industrial control, with a focus on the ethics of profit and social responsibility. Through the proposed training program, the project prepares the candidate as an independent scholar whose research program links empirical and normative research with practical interventions to positively influence ethics and justice in private sector genomics. The first phase of research (conducted during the K phase, alongside training activities) is a comparative study examining social and cultural factors involved in perceptions of ethical issues among members of industry. The comparative study focuses on three biotech hubs in the US (the Bay Area, San Diego, and Boston), as well as an additional site in South Africa (Cape Town). The South African site helps place investigation of the US industry in light of a shifting global industry, and especially South Africa’s policy focus on genomics for population health (as well as its role in the H3Africa initiative). The study also considers industry subsector and individual company culture, in examining influences on industry approaches to social and ethical issues. During its R phase, the project then involves a systematic normative analysis of profit and social obligation in the genomics industry, based on key theories from bioethics and business ethics. The project will then feed this scholarly analysis back to industry stakeholders; using a Delphi study, it allows members of industry to use results of the normative analysis in strategizing interventions with the greatest likelihood of influencing the genomics industry in ethically desirable ways. This project addresses the NHGRI ELSI research priorities of genomic equity and social justice, as well as genomics and public health. Its career development plan focuses on training in normative analysis and Delphi methods, as well as content training in genomics and entrepreneurship. The training will be conducted at Johns Hopkins University, where the school’s preeminent bioethics center houses world experts in qualitative and quantitative empirical bioethics, alongside the University’s leading research and training in the biomedical sciences and their application in industry. The integrated research and training plan will prepare the candidate as an independent ELSI scholar with a rigorous research program focused on empirical and normative analysis of the business of biomedicine and genomics, and engagement with industry stakeholders.

该K99/R00奖旨在生成科学和干预措施来指导基因组公司 走向更多的实践。它通过一个为期五年的培训和研究项目来进行调查 基因组行业成员的观点，并利用他们为正常分析和 确定可行的途径通往具体变化。该项目解决了价格，访问和工业问题 控制，重点是利润和社会责任的道德规范。通过拟议的培训计划， 该项目将候选人作为独立学者准备，其研究计划将经验和 正常研究采取实际干预措施，以积极影响私营部门的道德和正义 基因组学。研究的第一阶段（在K阶段进行，以及培训活动）是 比较研究研究了参与对道德问题看法的社会和文化因素 工业成员。比较研究的重点是美国的三个生物技术枢纽（湾区，SAN 迭戈和波士顿），以及南非（开普敦）的附加地点。南非网站有帮助 根据不断变化的全球行业，尤其​​是南非的政策，将美国行业投资投资 专注于人群健康基因组学（及其在H3africa倡议中的作用）。该研究还考虑了 在研究对社会行业方法的影响时，行业子部门和个人文化 和道德问题。在其R阶段，该项目涉及对利润的系统正常分析和 基于生物伦理学和商业道德的关键理论，基因组学行业的社会义务。这 然后，项目将把这种科学的分析提供给行业利益相关者；使用Delphi研究，它允许 行业成员在战略干预措施中使用正常分析的结果 以道德上理想的方式影响基因组学行业的可能性。该项目解决了NHGRI 基因组公平与社会正义以及基因组学和公共卫生的ELSI研究重点。它的职业 开发计划的重点是正常分析和Delphi方法的培训，以及内容培训 基因组学和企业家精神。该培训将在约翰·霍普金斯大学（Johns Hopkins University）进行 学校杰出的生物伦理中心拥有世界定性和定量经验生物伦理学专家， 除了大学领域的领先研究和培训外， 行业。综合研究和培训计划将为候选人做好准备，成为一所独立的ELSI学校 严格的研究计划着重于生物医学业务的经验和正常分析 和基因组学以及与行业利益相关者的互动。