Department of Medical Humanities and Ethics, Columbia University, New York, NY, USA.
AJOB Empir Bioeth. 2022 Jul-Sep;13(3):166-178. doi: 10.1080/23294515.2022.2063993. Epub 2022 Apr 18.
Large amounts of capital are currently being invested in genomics companies across the "bench to clinic pipeline" - companies which are now shaping the future of biomedicine globally. Understanding the perspectives of people who work in such companies can contribute to shaping this industry in service of just and equitable futures of medicine.
Using in-depth interviews as the primary method, this paper analyzes perspectives on ethical and social issues in private sector genomics expressed by members of the commercial genomics industry in the US.
Interviewees described a wide range of issues as pressing ethical concerns in commercial genomics. Key themes included concerns about diversity in genetic datasets, data governance and control, and pricing and profits in the industry. However, concern about diversity of datasets was not accompanied by expressions of concern about diversity in the industry workforce.
Most interviewees described concerns in the industry that are rather removed from their own work. But along with this "ethical distancing," moral concerns appeared to be the basis for competition amongst companies - to attract both employees and customers. Research in business ethics suggests that expanding moral analysis of one's own work helps improve day to day decision-making in the interest of justice. Opening space for people to examine ethics in their own subsector may provide a means for the private sector genomics industry to become a leader in ethics in the biosciences and a model for equity in our current moment of late capitalism.
目前，大量资金正投入到“从实验室到临床”的基因组学公司中，这些公司正在塑造全球生物医学的未来。了解在这些公司工作的人的观点，可以为塑造这个行业服务，以实现医学公正和公平的未来。
本文采用深度访谈作为主要方法，分析了美国商业基因组学领域成员对私营部门基因组学中伦理和社会问题的看法。
受访者描述了商业基因组学中一系列紧迫的伦理问题，主要包括对基因数据集多样性、数据治理和控制以及行业定价和利润的关注。然而，对数据集多样性的关注并没有伴随着对行业劳动力多样性的关注。
大多数受访者描述了他们自己工作之外的行业关注问题。但是，除了这种“道德距离”之外，道德关注似乎是公司竞争的基础，以吸引员工和客户。商业伦理学研究表明，扩大对自己工作的道德分析有助于在正义的利益下改善日常决策。为人们在自己的子行业中审视伦理问题留出空间，可能为私营部门基因组学行业在生物科学领域的伦理引领和当前晚期资本主义时代的公平模式提供一种途径。
