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

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.