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: 10017284
• 负责人: Alexis Walker
• 金额: $ 5.45万
• 依托单位: JOHNS HOPKINS UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-12 至 2020-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10017284
• 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; Empirical Research; Employee; Entrepreneurship; 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; Methods; Modeling; National Human Genome Research Institute; Pathway interactions; Patients; Perception; Phase; Play; Policies; Price; Privacy; Private Enterprises; Private Sector; Privatization; Process; Public Health; Questionnaires; Research; Research Priority; Research Project Grants; Research Training; 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; base; career development; comparative; curative treatments; design; drug development; 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.

这个K99/R 00奖旨在产生奖学金和干预措施，以指导基因组公司 更公正的做法。它通过一个为期五年的培训和研究项目来做到这一点， 基因组学行业成员的观点，并利用它们为规范分析提供信息， 确定实现具体变革的可行途径。该项目涉及价格、准入和工业 控制，重点是利润和社会责任的道德。通过拟议的培训方案， 该项目准备候选人作为一个独立的学者，其研究计划联系经验， 规范性研究与实际干预措施，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，同时进行培训活动）是一个 比较研究，审查对道德问题的看法所涉及的社会和文化因素， 工业界的成员。这项比较研究的重点是美国的三个生物技术中心（湾区、旧金山和旧金山）。 迭戈和波士顿），以及南非（开普敦）的另一个地点。南非网站帮助 根据全球产业的变化，特别是南非的政策，对美国产业进行调查 重点关注促进人口健康的基因组学（及其在H3非洲倡议中的作用）。该研究还认为， 行业分部门和个别公司的文化，在审查对行业的社会方法的影响， 和道德问题。在研究阶段，该项目涉及对利润的系统规范分析， 基因组产业的社会责任，基于生物伦理学和商业伦理学的关键理论。的 然后，一个项目将把这一学术分析反馈给行业利益相关者;使用德尔菲研究，它允许 行业成员利用规范分析的结果制定干预措施的战略，以最大限度地 以合乎道德的方式影响基因组学产业的可能性。该项目涉及NHGRI ELSI的研究重点是基因组公平和社会正义，以及基因组学和公共卫生。其职业 发展计划的重点是规范分析和德尔菲方法的培训，以及 基因组学和创业精神。培训将在约翰霍普金斯大学进行， 学校卓越的生物伦理学中心拥有世界上定性和定量经验生物伦理学的专家， 除了大学在生物医学科学及其应用方面的领先研究和培训， 行业综合研究和培训计划将准备候选人作为一个独立的ELSI学者 具有严格的研究计划，专注于生物医学业务的实证和规范分析 和基因组学，以及与行业利益相关者的合作。