Pathways to Negotiating Genomics Research Partnerships
Supervised by: Dr. Sandra Lee, Chief of the Columbia Division of Ethics; Professor in the Department of Medical Humanities & Ethics, Vagelos College of Physicians & Surgeons, Columbia University
Project Background
As genomics research continues to expand globally, researchers and institutions are increasingly faced with ethical questions surrounding data ownership, privacy, benefit-sharing, consent, and decision-making authority. Traditional discussions around “trust” in research often overlook the institutional structures and policies that shape relationships between researchers and the communities involved in or affected by their work. This project, part of the NIH-funded Ethical, Legal, and Social Implications (ELSI) research program, seeks to better understand how genomics research partnerships are created, negotiated, and sustained across different stakeholders and institutions. By examining these dynamics, the project aims to support more reciprocal, transparent, and mutually beneficial collaborations in emerging biotechnologies.
Research Questions
This project asks how genomics research partnerships can become more reciprocal, transparent, and equitable for everyone involved. It explores how legal, ethical, and institutional frameworks influence negotiations between research institutions and stakeholders, and how these systems can either support or limit productive and mutually beneficial relationships in genomics research. A major focus of the project is identifying the points in the research lifecycle where partnership-building and negotiation are most critical.
Objectives
A central goal of the project is to map the policies and institutional structures that shape genomics partnerships and to understand how stakeholders navigate them in practice. The team aims to translate these insights into a practical “negotiation playbook” that identifies key decision points and offers guidance for building transparent, equitable, and long-term partnerships. The project also seeks to create opportunities for multidisciplinary dialogue and develop educational resources focused on ethical partnership-building in emerging biotechnologies.
Methodology
The project uses qualitative and policy-focused methods to understand how genomics partnerships are formed and negotiated. This includes analyzing laws, regulations, and institutional policies, organizing and synthesizing documents that shape research governance, and observing how decisions unfold across institutions. The team conducts interviews, prepares fieldsite materials, and engages stakeholders to understand how policies are interpreted in practice.