Research in the division focuses on conceptual, empirical, and policy-related bioethics research to address emerging challenges in biomedical research and health care. Topic areas include gene sequencing and genetic testing, machine learning and medical decision-making, big data and the learning health system, and access to and equity of care.
The division is building resources to support individual and multidisciplinary investigation into the bioethical, ethical, legal, and social implications of research throughout the university. Currently in development, we plan to offer seminars, short courses, consultations, workshops, a listserv, and a newsletter on bioethical research issues to the Columbia University community.
Current Research in the Division
A major challenge for precision medicine research is including historically under-represented groups in numbers sufficient to ensure statistically valid inferences of the influence of relevant risk factors, including genetic contributions to disease risk. Precision medicine researchers have recognized the critical need to enhance diversity and have implemented a wide variety of approaches to achieve this. All such approaches, however, are shaped by stakeholders’ understandings of what kinds of diversity matter, the local logistical constraints under which precision medicine research is actually being conducted, and the responses of communities to those approaches. Investigating these complex factors from the perspectives of multiple stakeholders in precision medicine research will be essential to effectively address longstanding inequities in genomic and related forms of precision medicine research.
Our study seeks to take advantage of the current proliferation of diversity and inclusion practices to study their heterogeneity, commonalities, and effects on diversifying participation in precision medicine research ("PMR"). We will determine through in-depth analyses of PMR studies how concepts such as definitions of diversity (e.g. genetic ancestry markers, self-reported race and ethnicity) impact practices such as retention, engagement, and return of results. Taking a life course perspective to research relationships, we aim to assess how approaches towards diversity and inclusion are managed in tandem with other research goals and the implications of specific trade-offs that result.
Our study aims are to:
- Identify scientific and sociopolitical justifications for goals of inclusion and conceptual definitions of diversity in precision medicine research;
- Determine how scientific, social, and technical factors influence the operationalization of diversity and implementation of inclusion in precision medicine research; and
- Engage stakeholders to create data-informed guidance that describes the strengths and weaknesses of diversity and inclusion decisions and practices in precision medicine research.
Principal Investigator: Sandra Soo-Jin Lee, PhD
In the emerging era of precision medicine, there have been increasing calls for diversity and the inclusion of historically under-represented racial and ethnic populations in biobanking and precision medicine research. Recent findings suggest that the lack of diversity in genetic repositories may pose serious challenges to identifying genetic variants that are clinically significant in certain populations. These concerns have been linked to ethical concerns over disparities in health and disease among racial and ethnic groups. Despite increasing scrutiny of diversity in recruitment efforts in genomics research, there are few studies that integrate scientific, social, and ethical concerns that are attached to discourse on diversity. This project aims to provide a conceptual framework of diversity that is multi-disciplinary and takes into account the historical and social context in which diversity is invoked in genomics.
The specific aims of this research are:
- To investigate how discourse on human diversity and difference in population based genomics research has changed over time.
- To identify the ethical implications for inclusion of diversity for researcher-participant relationships, including issues related but not limited to “recruitment,” “consent,” “group harm,” and “benefit-sharing."
- To develop a conceptual framework for diversity in genomics research that addresses ethical values of respect, beneficence, and justice.
ELSI.hub is a collaboration between Stanford and Columbia Universities and partners at the Hastings Center and Harvard University, whose mission is to enhance the production and use of ELSI research by the ELSI community and other stakeholders. The goal of ELSI.hub is to serve as a locus for resource sharing and community building to enhance the production, sharing, and use of research on the ethical, legal, and social implications of genetics and genomics ("ELSI research"), using the “knowledge to action” conceptual framework which highlights facilitators of and barriers to knowledge sharing and use. ELSI.hub will be guided by the principles of responsiveness, inclusion, adaptability, rigor, transparency, and open access. It will build in responsiveness to community needs, focusing on ELSI researchers, and incorporating National Human Genome Research Institute and stakeholder input to prioritize services.
The specific aims of ELSI.hub are to:
1. Create a platform to identify, collect, index and share ELSI research products.
2. Provide analytic functions of curation and synthesis of ELSI research on key topics, and mapping the ELSI field.
3. Convene a broad base of stakeholders with relevant expertise to contribute to the development of ELSI.hub resources and to address emerging ELSI questions on genomics research.
4. Engage in outreach, dissemination, and training to support the contribution to, and development and use of ELSI.hub resources.