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: 10328276
• 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/10328276
• 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; Persons; 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; ethical legal 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.

K99/R00奖旨在产生奖学金和干预措施，以指导基因组学公司 走向更公正的实践。它通过一个为期五年的培训和研究项目做到这一点，该项目调查 来自基因组学行业成员的观点，并利用它们为规范分析和 确定实现具体变革的可行途径。该项目解决了价格、准入和工业问题。 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， 该项目为候选人准备成为一名独立学者，其研究计划将经验和 通过实际干预对私营部门的道德和司法产生积极影响的规范性研究 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 关于社会和文化因素与人们对道德问题的看法的比较研究 工业界的成员。这项比较研究集中在美国的三个生物技术中心(旧金山湾区、旧金山 (迭戈和波士顿)，以及在南非(开普敦)的另外一个地点。南非网站提供了帮助 根据不断变化的全球行业，特别是南非的政策，对美国行业进行调查 侧重于基因组学促进人口健康(及其在H3非洲倡议中的作用)。该研究还考虑到 行业分类和个人企业文化，在审查对行业社会方法的影响 以及道德问题。在其R阶段，该项目随后涉及对利润和 基因组学行业的社会义务，基于生物伦理学和商业伦理学的关键理论。这个 Project然后将这一学术分析反馈给行业利益相关者；使用Delphi研究，它允许 行业成员将规范分析的结果用于最大限度地制定干预策略 以合乎伦理道德的方式影响基因组学产业的可能性。该项目旨在解决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。它的职业生涯 发展计划侧重于规范分析和德尔菲法方面的培训以及#年的内容培训 基因组学和企业家精神。培训将在约翰·霍普金斯大学进行，那里的 该学院卓越的生物伦理学中心汇集了定性和定量经验生命伦理学的世界专家， 除了大学在生物医学科学方面的领先研究和培训及其在 工业。综合研究和培训计划将使候选人成为一名独立的ELSI学者 具有专注于生物医药业务的实证和规范分析的严谨研究计划 和基因组学，以及与行业利益相关者的接触。