Diversity, Profit, Control: An Empirical Study of Industry Employees' Views on Ethics in Private Sector Genomics.

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，大量资金正投入到贯穿“从实验室到临床”各个环节的基因组学公司——这些公司正在塑造全球生物医学的未来。了解此类公司员工的观点有助于塑造这一行业，以服务于公正和平等的医学未来。 本文以深度访谈为主要方法，分析了美国商业基因组学行业成员对私营部门基因组学中伦理和社会问题的看法。 受访者将广泛的问题描述为商业基因组学中紧迫的伦理关切。关键主题包括对基因数据集多样性、数据治理与控制以及行业定价和利润的担忧。然而，对数据集多样性的担忧并没有伴随着对行业劳动力多样性的担忧表达。 大多数受访者描述的行业担忧与他们自身的工作相去甚远。但是伴随着这种“伦理距离”，道德关切似乎是公司之间竞争的基础——以吸引员工和顾客。商业伦理研究表明，扩大对自身工作的道德分析有助于为了正义改进日常决策。为人们开辟审视自身子行业伦理的空间，可能为私营部门基因组学行业成为生物科学伦理的领导者以及我们当前晚期资本主义时期公平的典范提供一种途径。