Our Short Courses provide researchers working in a variety of disciplines with a focused opportunity to learn about the variety of research methodologies that can be used to investigate ELSI issues. These courses are open to trainees and researchers in the Columbia University community, and to other researchers upon request.
SHORT COURSES
December 9, 2020
Research on the Psychosocial Impacts of Genomic Information: Introduction to Experimental Designs
Among various approaches to patient-oriented research, experimental designs in which participants are randomly assigned to different conditions are often considered the most rigorous. For example, in clinical trials, random assignment of participants to receive alternative treatments is crucial to evaluate treatment efficacy while protecting against false inferences due to extraneous factors (e.g., other differences in traits that influence survival between treated and untreated persons). Experimental designs are also extremely powerful for study of the potential ethical, legal, and social impacts (ELSI) of genetic and genomic information. This short course will provide background about the importance of such designs for ELSI-related research, the types of questions they can address, and the various ways in which they can be implemented.
Course faculty:
Matthew S. Lebowitz, Ph.D.
Assistant Professor of Medical Psychology (in Psychiatry), Columbia University
Jo C. Phelan, Ph.D.
Professor Emerita, Department of Sociomedical Sciences, Mailman School of Public Health, Columbia University
Lawrence H. Yang, Ph.D.
Associate Professor of Social and Behavioral Sciences, School of Global Public Health, New York University
Ruth Ottman, Ph.D.
Professor of Epidemiology (in Neurology and the Sergievsky Center), and Deputy Director, Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics, Columbia University
September 20, 2019
Investigating the Ethics of Polygenic Risk Scores: Short Course on ELSI Research at the Cutting Edge
Polygenic risk scores (PRS) are being used increasingly to investigate neurologic and psychiatric disorders, as well as phenotypes such as intelligence and educational attainment. The widespread use of these scores raises a number of ethical, legal, and social issues (ELSI). In this short course, participants will learn about: the science underlying this new research, the ELSI questions that arise in the context of such research (e.g., informed consent, results disclosure, communication of uncertainty, application to influence behavioral change, stigma, policy implications), and the types of research approaches that could be used to address ELSI-related questions arising from use of PRS.
The Science of Polygenic Risk Scores:
Eimear Kenny, PhD
Founding director, Center for Genomic Health, and Associate Professor of Medicine and Genetics, Icahn School of Medicine at Mount Sinai
Conceptual Issues in the Construction of PRSs:
Lucas Matthews, PhD
Postdoctoral researcher co-sponsored by The Hastings Center and the Columbia Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics
The Ethics of using PRSs to Study Social Outcomes:
Erik Parens, PhD
Senior research scholar at The Hastings Center, director of the Center’s new Initiative in Bioethics and the Humanities, and steering committee member, Columbia Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics Study Designs and Approaches for ELSI Research on PRSs
Ruth Ottman, PhD
Professor of Epidemiology (in Neurology and the Sergievsky Center), Columbia University, deputy director, Columbia Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics
September 7, 2018
Return of Individual Results in Genomic Research: Ethical and Practical Considerations
Historically, individual results from genomic research have been offered to participants only in exceptional cases (e.g., findings with serious and “actionable” health implications). This approach is consistent with the view that research is primarily aimed at producing generalizable knowledge rather than individual benefit. However, research participants value individual results, and many bioethicists have argued that offering to return individual findings is consistent with basic principles of beneficence, justice, and respect for persons. A 2018 report by the National Academies of Sciences, Engineering, and Medicine evaluated these issues in depth and made recommendations intended to permit greater return of individual research results over time. This short course will introduce historical trends in this arena, ethical and practical considerations, empirical findings with actual return of results, and approaches for return of results in large-scale genomic studies such as the All of Us Research Program. Participants will become familiar with the major issues to consider when making decisions about return of results in their genomic research, and will have an opportunity to analyze the risks and benefits and the ethical, regulatory, and logistical challenges involved.
Course Directors:
Ruth Ottman, PhD
Professor of Epidemiology (in Neurology and the Sergievsky Center), and Deputy Director, Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics, Columbia University
Julia Wynn, MS, MS, CGC
Senior Genetic Counselor/Clinical Research Manager, Department of Pediatrics, Columbia University
Louise Bier, MS, CGC
Director of Genetic Counseling, Institute for Genomic Medicine, Columbia University
November 30, 2016
Data Collection in Transdisciplinary Research: Quantitative and Qualitative Approaches
Research on complex problems is frequently transdisciplinary, requiring teams of investigators with expertise in diverse area, and development of protocols for data collection in such studies can be challenging. This is especially true in studies addressing the ethical, legal, and social implications (ELSI) of genomic medicine, which may require expertise in such fields as psychology, sociology, epidemiology, law, bioethics, philosophy, molecular genetics, and clinical genetics. This short course will provide an overview of data collection methods for transdisciplinary research, including how to develop instruments for quantitative research and evaluate their psychometric properties, and how to decide when a qualitative approach is needed and the fundamentals of qualitative research.
Course Directors:
Lawrence Yang, PhD
Associate Professor of Sociobehavioral Sciences, College of Global Public Health, New York University and Adjunct Associate Professor of Epidemiology, Mailman School of Public Health, Columbia University
Karolynn Siegel, PhD
Professor of Sociomedical Sciences and Director, Center for the Psychosocial Study of Health and Illness, Mailman School of Public Health, Columbia University
April 24, 2015
Introduction to ELSI Research on Genetics and Genomics
The acronym “ELSI” (Ethical, Legal, and Social Implications) refers to a broad array of bioethical, psychosocial, and policy issues arising from developments in human genetics and genomics. Research on ELSI is increasingly important with the rapid introduction of precision medicine, and is inherently transdisciplinary, involving teams with expertise in diverse areas (e.g., molecular genetics, clinical genetics, medicine, psychology, sociology, law, bioethics, philosophy, epidemiology). Five percent of the extramural budget of the National Human Genome Research Institute (NHGRI) is set aside for ELSI research, making this a very fundable area. This short course will introduce ELSI research questions and methods and show how ELSI research can be incorporated into ongoing genomics research.
Course Directors
Ruth Ottman, PhD
Professor of Epidemiology (in Neurology and the Sergievsky Center)
Deputy Director, Center for Research on Ethical, Legal & Social
Implications of Psychiatric, Neurologic & Behavioral Genetics,
Columbia University
Paul S. Appelbaum, MD
Dollard Professor of Psychiatry, Medicine, & Law
Director, Division of Law, Ethics, and Psychiatry
Director, Center for Research on Ethical, Legal & Social
Implications of Psychiatric, Neurologic & Behavioral Genetics, Columbia University
Wednesday, April 23, 2014
Mixed Methods Research: Combining Qualitative and Quantitative Approaches
Both qualitative and quantitative research approaches may be needed to address complex research questions. For example, qualitative research may be crucial for identifying salient issues for subsequent large-scale quantitative (survey-based) research; and conversely, quantitative studies may expand the scope and generalizability of findings from qualitative research. This short course will address the methodologies commonly used in these two approaches and how they can be combined to provide a comprehensive approach to the investigation of complex problems.
Course Director
Rachel Torres, EdD, MPH, CHES
Assistant Professor , Borough of Manhattan Community College – City University of New York; Department of Health Education; Founding Member of the Mixed Methods International Research Association
