Practical
Approaches to Enhancing Fairness, Social Responsibility
and the Inclusion of Diverse Viewpoints in Biomedicine
Workshop Description
In
biomedical research and clinical medicine, many of the ethical frameworks and
processes focus on benefits and harms at the individual level. However, in biomedicine, there is increasing
recognition of a need to implement frameworks and processes that address the
social impacts of technologies, such as genomics and AI technologies, and their
social benefit for underrepresented populations and communities. For example, studies demonstrating the
potential for bias in AI shed light on the need to develop processes to more effectively identify and address downstream impacts of medical
AI, as well as engage communities who are stakeholders in the research.
Privacy is often envisioned as an individual right, but the collection and use
of data also have repercussions at the level of groups and communities. For
that reason, there have been recent efforts to arrive at models for data
stewardship and data sovereignty. This workshop will provide a forum for
discussion of practical approaches to enhancing fairness, social responsibility and inclusion of diverse viewpoints in
biomedicine. Interdisciplinary research on ethics and how fairness, social responsibilit,y and community
engagement can be operationalized in biomedical research will provide a
foundation for robust discussion on these issues.
Contact:
Nicole Martinez, JD, PhD, nicolemz@stanford.edu
The
3-hour workshop will consist of two parts:
● The first part will include a
series of 15-minute talks that address fairness, social responsibility &
inclusion/community engagement for different areas of biomedicine, followed by
an audience Q& A and discussion of the topics such as diversity in
precision medicine, ethical and sustainable data stewardship, and public
engagement with social and behavioral genomics.
● For the second half of the
workshop, weare conducting an interactive exercise
with the audience. Focusing on case studies, based on topics from the first
half of the workshop, such as community engagement and data stewardship, we
will use smartphone-based polling to facilitate feedback from the audience on
approaches, challenges and solutions for addressing
the ethical issues from the case study. The results from the interactive
exercise will provide fruitful areas of discussion with the audience.
Learning Objectives
By the end of
this workshop attendees will be able to:
Audience
Engagement
This
session is intended for all facets of the biomedical community. The panel will
include a five-minute introduction by the moderator followed by 4-5, 15-minute
presentations. We strongly believe in the importance of audience engagement,
particularly in a workshop that endeavors to equip participants with the
necessary tools to consider the concepts of social responsibility and public
and community engagement. As such, we have allotted the remaining time for
small-group interactive discussions and whole-group discussion.
Presenter Information
This
workshop brings together rich and interdisciplinary perspectives from medical
anthropology, biomedical engineering, education, and bioethics, as well as, legal perspectives. Importantly, our
multidisciplinary and multi-institution workshop aims to do more than provide
the PSB community with the opportunity to come together to analyze and evaluate
efforts to enhance social responsibility and the inclusion of diverse
viewpoints in biomedicine. We offer workshop attendees strategies for
intervening to assist with promoting fairness, social responsibility,
inclusion, and justice in biomedical research and practice.
About the Workshop Organizers
Daphne Martschenko, Ph.D., is an Assistant Professor at
the Stanford University Center for Biomedical Ethics and a co-organizer of the
international Race, Empire, and Education Research Collective. Dr. Martschenko holds an MPhil from the University of Cambridge
in Politics, Development, and Democratic Education and in 2019 received a Ph.D.
in Education, also from the University of Cambridge. Dr. Martschenko’s
work advocates for and facilitates the ethical and responsible conduct of and
public engagement with genetic/genomic research.
Nicole
Martinez-Martin, JD, Ph.D., received her JD from Harvard Law
School and her doctorate in social sciences (comparative development/medical
anthropology) from the University of Chicago. Her broader research interests
concern the impact of new technologies on the treatment of vulnerable
populations. Her graduate research included the study of cross-cultural
approaches to mental health services in the Latine
community and the use neuroscience in criminal cases. Her recent work in
bioethics and neuroethics has focused on the ethics
of AI and digital health technology, such as digital phenotyping or computer
vision, for medical and behavioral applications.
Meghan Halley,
PhD, MPH,
is a Senior Research Scholar in the Center for Biomedical Ethics (SCBE) at
Stanford University. She completed her doctorate in medical anthropology from
Case Western Reserve University in 2012, and additional training in health
services research at the Palo Alto Medical Foundation Research Institute from
2012 through 2016. Her current research focuses at the
intersection of the ethics and economics of new genomic technologies. Her
current projects include examining ethical issues related to sustainability and
governance of patient data and relationships when large clinical genomic
studies transition to new models of funding; ethnographic work exploring how
diverse stakeholders perceive value in the use of genome sequencing for
diagnosis of rare diseases; and the development of new measures for assessing
patient-centered outcomes in pediatric rare diseases.
Additional
presenters:
● Mildred K. Cho, PhD,
Professor of Pediatrics, Center for Biomedical Ethics, Stanford University
● Sandra Soo-Jin Lee, PhD, Chief of the Division of Ethics, Columbia
University, speaking on: Ethics of Inclusion: Diversity in Precision Medicine