Archived Events
2024
2023
2022
Photo by Elliot Sloman on Unsplash
2024
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Human Death Ushering in the Dawn of New Life Daniel E. Hall, MD, MDiv, MHSc Abstract: Natural, but not accidental or traumatic, human organismal death initiates a state within the body wherein tissue components strive to survive by mounting the expression of survival genes. This phenomenon offers an opportunity to gain insight into biological resilience. Of outstanding interest is the observation that in humans such survival response is mounted following “slow” but not “fast” (traumatic) death. This work increases understanding of the ways in which cells and tissues, and the genes in them, strive for life even as the body dies. The phenomenon also raises bioethical and policy questions that will be explored during this RESI First Fridays Seminar. Co-sponsored by the Center for Bioethics & Health Law and the Research, Ethics and Society Initiative (RESI) Recording from April 5, 2024, noon – 1:00 pm |
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Visual Art and Digital Artistry Abstract: In March 2023, Boris Eldagsen declined a prize from the Sony World Photography Awards, revealing that his entry was created using generative AI. In a statement, Eldagsen called for artists to engage in a “discussion about what we want to consider photography and what not.” This RESI Dialog event seeks to facilitate this discussion. Eldagsen will review his decades-long career in photography and photomedia, as well as his upcoming projects which use digital technology to explore the complexities of the human subconscious. He will examine his role as a public educator and consultant, addressing the opportunities and challenges posed by generative AI for artists, journalists, and students. Research, Ethics and Society Interdisciplinary Dialogues on Generative AI Recording from March 29, 2024, noon – 1:30 pm |
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Inequality & the Environment: Moving from Science to Action that Advances Environmental Justice and Health Equity Abstract: People of color are more likely to breathe dirty air, drink contaminated water, and live near hazardous waste sites, industrial agriculture operations, and other sources of pollution. Accelerating climate change is having additional disproportionate effects on minoritized populations. This talk will discuss structural determinants of environmental health disparities and community-engaged research to develop decision support tools that advance environmental justice. Presented by the University of Minnesota Center for Bioethics Recording from March 1, 2024, 1:00 – 2:00 pm |
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Navigating Authorship: Who’s on First? Charmaine Royal, PhD (Duke University) Sandra Soo-Jin Lee, PhD (Columbia University) Moderated by: Maya Sabatello, LLB, PhD (Columbia University) Abstract: Publishing in a top-notch scientific journal takes time, effort, and the ability to navigate power dynamics while maintaining research integrity. Panelists will discuss the importance of authorship for building collaborations, career development and tenure; authorship criteria; responsibilities arising from authorship; multidisciplinary challenges, and conflicts and communication. CERA TraineeHub sponsored by NHGRI Recording from February 16, 2024, noon – 1:00 pm |
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Generative AI: Academic Freedom, Academic Values, and Productivity Kristin Kanthak, PhD Shelome Gooden, PhD Sponsored by the Sara Fine Institute and the Research, Ethics and Society Initiative Recording from February 9, 2024, 1:00 – 3:00 pm |
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Twisted Helix: Can Public-Private Partnerships in Large-Scale Genomic Projects Be Fair and Equitable? Brad Malin, PhD (Vanderbilt University Medical Center) Moderated by: Alexis Walker, PhD (Johns Hopkins Berman Institute of Bioethics) Abstract: Biotechnological innovation almost always entails all three strands of the triple helix: academia, government, and industry. This is increasingly true for large scale genomics and biomedical research projects such as the Human Pangenome Reference Consortium, and the Earth BioGenome, Human Cell Atlas, and BRAINshare projects, which include commercial uses of data and samples. Concerns about pricing and access to health goods and services breed skepticism that the innovation ecosystem is fair and equitable. Panelists will discuss several concrete cases in which public-private partnerships have raised ethical issues and address whether and how ELSI scholars might be useful in making the system more transparent, fair, and trustworthy. Sponsored by the ELSI Friday Forum Recording from February 9, 2024, noon – 1:00 pm |
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What Can Geneticists Do to Prevent the Misuse of Genomic Data? Part 2 Ashley Smart, PhD (Massachusetts Institute of Technology) Moderated by: Robbee Wedow, PhD (Purdue University) Abstract: Recent, but reemergent misuses of genetic data and research remain a critical issue in the scientific and public spheres. While many scientists are concerned about how their own research might be misused by nefarious actors, training or advice about best practices in this area remains sparse. The first session provided a forum for the discussion of practical actions for scientists interested in preventing the misuse of genetic data and research by white supremacists and others. This session focused on addressing the misuse of genetic data and research once it has happened. Sponsored by the ELSI Friday Forum Recording from January 26, 2024, 1:00 – 2:00 pm |
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Social Activism and Digital Revolutions Scott Wolovich Abstract: Artist and activist Edith Abeyta and Executive Director and Co-Founder of New Sun Rising Scott Wolovich discussed their careers and the multiple ways they have worked to improve the health and well-being of Pittsburgh's residents and its natural environment. This conversation highlighted how digital innovations, including generative AI, open new methods of data collection and implementation, as well as the ethical challenges they pose around issues of privacy and surveillance. Together, they offered insight into how students, educators, and citizens can engage with digital technology as a tool for community-oriented engagement and advocacy. Research, Ethics and Society Interdisciplinary Dialogs on Generative AI Recording from January 26, 2024, noon – 1:00 pm |
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Generative AI and Teaching: Uses in Evaluation of Learning James P. Purdy, PhD Annette Vee, PhD Facilitator: Abstract: As educators consider the implications of tools like ChatGPT on instructional design and student learning, this panel explored uses in the assessment of learning. Panelists addressed research on automated graders, the ways that generative AI is being leveraged for assessment, and the advantages and disadvantages. Sponsored by the Sara Fine Institute and the Research, Ethics and Society Initiative Recording from January 19, 2024, 1:00 – 2:15 pm |
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What Can Geneticists Do to Prevent the Misuse of Genomic Data? Part 1 Brian Donovan, PhD (BSCS Science Learning) Moderated by: Robbee Wedow, PhD (Purdue University) Abstract: Recent, but reemergent misuses of genetic data and research remain a critical issue in scientific and public spheres. While many scientists are concerned about how their own research might be misused by nefarious actors, training or advice about best practices in this area remains sparse. In this first event of a two-part series, panelists discussed practical actions for scientists interested in preventing the misuse of genetic data and research by white supremacists and others. Panelists addressed scientists and researchers with perspectives from the media and education scholarship, with a focus on several prevention strategies, such as changing genetics curricula, identifying often misused areas of genetic science, clearly communicating findings, preparing a media strategy. Group discussion was directed around one recent misuse of genetic research related to the supermarket shooting in Buffalo, NY. Sponsored by the ELSI Friday Forum Recording from January 19, 2024, 1:00 – 2:00 pm |
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Polygenic Risk Prediction in Diverse Populations and Contexts: Scientific and Ethical Considerations Alicia Martin, PhD (Assistant Professor, Harvard Medical School) Moderated by: Alham Saadat, MS (Associate Director of Scientific Equity, Broad Institute of MIT and Harvard) Abstract: The differential performance of polygenic risk scores (PRS) by population genetic background is a well-known scientific concern and one of the most important barriers to their equitable translation for clinical use. Not only must the social repercussions of how people are grouped for test development be considered, but the communication of their context specificity and differential performance to patients and their clinicians must be carefully managed. Drawing on recent research experiences with the development, validation, and implementation of PRS for common complex disease risk, this webinar explored the scientific and ethical considerations relevant to the widespread adoption of PRS for clinical care. Sponsored by the ELSI Friday Forum Recording from January 12, 2024, noon – 1:00 pm |
2023
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Assembling Public Perspectives on AI Paul Waters, JD (Democracy Fund) Baobao Zhang, PhD (Maxwell School of Citizenship and Public Affairs, Syracuse University) Moderated by: Valerie Wirtschafter, PhD (Artificial Intelligence and Emerging Technology Initiative, Brookings Institution) Abstract: The voice of the public has generally been left out of policy debates on the governance of AI. In October 2023, Syracuse University Professor Baobao Zhang partnered with the Center for New Democratic Processes (CNDP) to conduct the Public Assembly on High Risk AI (AI Assembly). In this talk, panelists discuss the assembly's findings. Recording from December 13, 2024, 1:00 – 2:30 pm |
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Affirming Sex and Gender Diversity in Genetics Practices, Policies, and Laws Kellan Baker, PhD, MPH, MA (Whitman-Walker Institute) Moderated by: Ina Amarillo, PhD, MSc (Penn State University) Abstract: There are already many barriers to appropriate health care for members of transgender, gender diverse, and intersex (TGDI) communities. Fear of discrimination drives TGDI people to avoid clinical encounters and research participation, which leads to incomplete and inaccurate genetic data. The recent surge in legislation in the US targeting access to age-appropriate and affirming health care for TGDI individuals is a direct threat to the health, autonomy, and well-being of TGDI people and also threatens to undermine accurate genetic risk assessment, patient care, and genomics research. Beyond banning best-practice care for these communities, these laws weaponize genetics against TGDI people by falsely conflating sex chromosomes with outdated binary concepts of sex and gender. This session discussed responsibilities and actions of researchers and clinicians to support gender-affirming health care and research for TGDI people nationwide. Sponsored by the ELSI Friday Forum Recording from December 8, 2023, noon – 1:00 pm |
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Humans Outside the Loop Abstract: In this talk, Professor Tschider examined the key issues in existing liability models for AI products. She proposed an alternative regulatory scheme which reframes liability and acts more in accordance with tort objectives. Future of Law in Technology and Governance Scholarly Seminar co-sponsored by the Center for Governance and Markets and the Center for Bioethics & Health Law Recording from December 7, 2023, 3:00 – 4:00 pm |
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The Genomics of PTSD Risk: Scientific and Ethical Perspectives Moderated by: Josephine Johnston, LLB, MBHL (The Hastings Center, University of Otago) Abstract: Post-traumatic stress disorder (PTSD) can develop following a traumatic event such as natural disaster, sexual or physical assault, or war. Not all people exposed to the same trauma will develop PTSD—rates differ based on the nature of the exposure, as well as environmental and genetic factors. Using genomics to identify those most at risk for PTSD and better understanding its etiologic pathways could help clinicians and others, including the military, to treat, prevent, and minimize risk for the disorder. But the use of genomic screening to predict PTSD risk in occupational contexts like military service also raises ethical challenges. Drawing on research with the US VA’s Million Veterans Program, this webinar explored the scientific and medical promise of PTSD genomics and the ethics of using genetic markers for PTSD vulnerability and resilience in high-risk occupational contexts like the military. Sponsored by the ELSI Friday Forum Click to view recording, from November 10, 2023, noon – 1:00 pm |
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Archives, Data Storage, and Surveillance Dominic Bordelon, MLIS in discussion with Bridget Keown, PhD Abstract: Generative AI has realigned conversations on academic integrity, digital ethics, pedagogy, and research practices. As a leader in interdisciplinary research initiatives and the ethical use of data, the University of Pittsburgh's Research, Ethics and Society Initiative (RESI) seeks to create space where time, interdisciplinary insight, and thoughtful discourse take priority, and where leading scholars and experts can consider how their work supports common goals, and examine the differences in their approach, methodology, and philosophy. This discussion explored the present state of our personal histories as data in archives and storage sites around the world. How can we cope with the space and energy needed to preserve our past? Who is responsible for processing our pasts? What does this work mean for our futures? Research, Ethics and Society Interdisciplinary Dialogs on Generative AI Click to view recording, from November 10, 2023, noon – 1:00 pm |
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Generative AI and Research: Policies, Practices, and Ethics in Publishing Paolo Palmieri, PhD Bill J. Yates, PhD Abstract: This panel discussed the use of generative AI in the various practices of producing published material, including writing research proposals and writing, reviewing, and publishing manuscripts. Yates is Editor-in-Chief of Experimental Brain Research and former Editor-in-Chief of Journal of Neurophysiology. Palmieri is Editor of a book series, History and Philosophy of Science: Heresy, Crossroads, and Intersections. Kear reported on a project undertaken within the University Library System to identify the current policies and practices addressing generative AI of high impact journals in multiple fields. Sponsored by the Sara Fine Institute and the Research, Ethics and Society Initiative Recording from November 10, 2023, 10:00 – 11:15 am |
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Data and the Digital Future Abstract: Our lives are defined by the data we produce. We exist in our messages, our financial transactions, the media we consume, and the connections we forge, both in the digital and the tangible world. But where does that data reside? Who has the authority to interpret it? And how do those narratives shape our lives? In her award-winning book Bottoms Up and the Devil Laughs: A Journey Through the Deep State, journalist Kerry Howley explores the vast facilities that government agencies use to store our data, and the many ways that data can be manipulated to shape specific political narratives, as well as our individual futures. In this presentation, Howley shared insights from her investigations into the world of data storage and surveillance, and the people engaged in selecting, interpreting, and deploying that data. She considered how secrets and power combine in these data storage facilities to shape our collective futures, and what we, as embodiments of our own data, can do about it. Research, Ethics and Society Initiative Seminar Series Click to view recording, from November 9, 2023, 5:00 – 6:30 pm |
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The Equality Machine: Harnessing Digital Technology for a Brighter, More Inclusive Future Abstract: Dr. Lobel demonstrated that although technology presents many challenges to equality and democracy, it also has a comparative advantage over humans in detecting discrimination, correcting historical exclusions, subverting stereotypes, and addressing long-standing issues such as climate, poverty, injustice, literacy, accessibility, speech, health, and safety. Her examples—from labor markets to dating markets—provided evidence for how technology can be harnessed for good. Future of Law in Technology and Governance Scholarly Seminar co-sponsored by the Center for Governance and Markets and the Center for Bioethics & Health Law Recording from November 9, 2023, 3:00 – 4:00 pm |
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A Neurobehavioral Approach to Understanding Implicit Bias in Research and Medicine Abstract: This discussion began with how implicit bias is defined and measured in behavioral neuroscience. Dr. Fraser then examined some classic experiments that have shaped how the concept of implicit bias has been discussed in the public and policy space. He then provided specific examples of how historical data can lead to the development of implicit bias in medicine. |
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Generative AI and Pedagogy: Values and Opportunities Chris Millet, MA Annette Vee, PhD Abstract: As educators consider the implications of tools like ChatGPT on instructional design and student learning, this panel explored positive uses of generative AI in teaching, fundamental literacies around generative AI for students, and issues of academic integrity. Sponsored by the Sara Fine Institute and the Research, Ethics and Society Initiative Click to view recording, from October 27, 2023, 1:00 – 2:15 pm |
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Generative AI in/as Theater and Performance Bella Poynton, PhD in discussion with Bridget Keown, PhD Abstract: Generative AI has realigned conversations on academic integrity, digital ethics, pedagogy, and research practices. As a leader in interdisciplinary research initiatives and the ethical use of data, the University of Pittsburgh's Research, Ethics and Society Initiative (RESI) seeks to create space where time, interdisciplinary insight, and thoughtful discourse take priority, and where leading scholars and experts can consider how their work supports common goals, and examine the differences in their approach, methodology, and philosophy. This discussion explored how performance art can critique and engage with digital technology, as well as how the theater continues to be a space of language development, political discourse, and technological innovation. Research, Ethics and Society Interdisciplinary Dialogs on Generative AI Click to view recording, from October 27, 2023, noon – 1:00 pm |
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CARE Panel: The Ethics of Human Challenge Studies Susan L. Koletar, MD, FACP, FIDSA (Ohio State University) Sponsored by the OSU Center for Ethics and Human Values CARE program, Center for Bioethics, College of Public Health, and Center for Clinical and Translational Science Click to view recording, from October 23, 2023, noon – 1:15 pm |
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The Replication Crisis: A Whodunit Abstract: This talk reviewed the evidence suggesting that a surprisingly large proportion of the empirical literature in the behavioral, social, and biomedical sciences is unreplicable. It discussed the distal and proximate causes of this low replicability, and invited discussion of the implications for science and society. Research, Ethics and Society Initiative Seminar Series Click to View Recording, from October 6, 2023, noon – 1:00 pm |
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Texting, Texting: The Effect of Text Messages On Voting, Volunteering, and Giving Future of Law in Technology and Governance Scholarly Seminar co-sponsored by the Center for Governance and Markets and the Center for Bioethics & Health Law Click to view recording, from October 5, 3:00 – 4:00 pm |
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A Preliminary Model of Moral Disengagement and Re-engagement of AI Developers Abstract: Machine learning predictive analytics (MLPA) are utilized increasingly in health care, but can pose harms to patients, clinicians, health systems, and the public. The dynamic nature of this technology creates unique challenges to evaluating safety and efficacy and minimizing harms. In response, regulators have proposed an approach that would shift more responsibility to MLPA developers for mitigating potential harms. To be effective, this approach requires MLPA developers to recognize, accept, and act on responsibility for mitigating harms. In interviews of 40 MLPA developers of health care applications in the United States, researchers found a subset of ML developers who made statements reflecting moral disengagement, representing several different potential rationales that could create distance between personal accountability and harms. However, researchers also found a different subset of ML developers who expressed recognition of their role in creating potential hazards, the moral weight of their design decisions, and a sense of responsibility for mitigating harms. They also found evidence of moral conflict and uncertainty about responsibility for averting harms as an individual developer working in a company. These findings suggest possible facilitators and barriers to the development of ethical ML that could act through encouragement of moral engagement or discouragement of moral disengagement. Sponsored by the Bioethics & Artificial Intelligence Affinity Group of the American Society for Bioethics and Humanities Click to view recording, from October 3, 2023, noon – 1:00 pm |
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Generative AI and Digital Humanities Ruth Mostern, PhD in discussion with Bridget Keown, PhD Abstract: Generative AI has realigned conversations on academic integrity, digital ethics, pedagogy, and research practices. As a leader in interdisciplinary research initiatives and the ethical use of data, the University of Pittsburgh's Research, Ethics and Society Initiative (RESI) seeks to create space where time, interdisciplinary insight, and thoughtful discourse take priority, and where leading scholars and experts can consider how their work supports common goals, and examine the differences in their approach, methodology, and philosophy. This discussion focused on the rich potential of the digital humanities, the possibilities for integrating generative AI, and the ethical implications for future interdisciplinary research. Research, Ethics and Society Interdisciplinary Dialogs on Generative AI Click to view recording, from September 29, 2023, noon – 1:00 pm |
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Researcher Access to Social Media Data: Lessons from Clinical Trial Data Sharing Abstract: As the problems of misinformation, child welfare, and heightened political polarization on social media platforms grow more salient, lawmakers and advocates are pushing to grant independent researchers access to social media data to better understand these problems. Yet researcher access is controversial. Privacy advocates and companies raise the potential privacy threats of researchers using such data irresponsibly. In addition, social media companies raise concerns over trade secrecy. Like social media data, clinical trial data implicates both individual privacy and trade secrecy concerns. Nonetheless, clinical trial data’s governance regime was gradually legislated, regulated, and brokered into existence, managing the interests of industry, academia, and other stakeholders. The result is a functionally successful (if yet imperfect) clinical trial data-sharing ecosystem. In this talk, based on a forthcoming article, part I sketched the status quo of researchers’ access to social media data and provided a novel taxonomy of the problems that arise under this regime. Part II reviewed the legal structures governing how clinical trial data is shared and traced the history of scandals, investigations, industry protest, and legislative response that gave rise to the mix of mandated sharing and experimental programs we have today. Part III applied lessons from clinical trial data sharing to social media data, and charted a strategic course forward. Two primary lessons emerged: First, law without institutions to implement the law is insufficient, and second, data access regimes must be tailored to the data they make available. Future of Law in Technology and Governance Scholarly Seminar co-sponsored by the Center for Governance and Markets and the Center for Bioethics & Health Law Click to view recording, from September 21, 2023, 3:00 – 4:00 pm |
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There is tremendous interest in research on psychedelics on the part of diverse stakeholders, including patients, researchers, funders, regulators, and policymakers at both the state and federal levels. Experts deliberated on the ethical, practical, and legal questions pertaining to psychedelics research, including unique risk considerations, issues pertaining to informed consent, study design and integrity, and inclusion of vulnerable groups, as well as the importance of preserving public trust. Sponsored by the Office for Human Research Protections of the US Department of Health and Human Services [View the March 31, 2023, archived lecture, Ethical and Policy Issues in Using Psychedelics for Mental Health, by Amy McGuire, PhD, which was presented as part of the Center’s annual Interprofessional Healthcare Ethics Conference.] Click to View Recording, from September 14, 2023, 8:45 am – 4:15 pm |
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Fair Access and Equity of Individualized Interventions for Ultrarare Genetic Conditions Alison Bateman-House, MPH, PhD (NYU Langone Health, University of Arizona) Moderated by: Meghan Halley, PhD, MPH (Stanford University) Abstract: Since application of the first individualized therapy in 2019, development of bespoke treatments has expanded rapidly. ‘Individualized therapies’ refer to products designed to treat one to a few individuals based on their specific molecular diagnosis, including directly administered vectored gene therapy, genetically modified cellular therapies, and antisense oligonucleotides. Individualized therapies offer a particularly exciting opportunity for patients with so-called “n-of-1” or “ultrarare” diseases, which lack incentives for drug development through traditional pathways. However, the high cost of their development and the inherently small number of patients eligible to receive each new therapy raise complex ethical concerns related to equity and access. How should research resources be allocated across the many thousands of ultrarare diseases eligible for this approach? Within disease communities, how should the specific gene targets be selected, and who should make these decisions? When and how should additional eligible patients be allowed to access newly developed therapies? Further, given the highly technical nature of the development process, will it ever be possible to safely expand access outside of elite academic medical centers? This ELSI Friday Forum explored these and other ethical considerations arising in this new therapeutic landscape. Sponsored by the ELSI Friday Forum Click to View Recording, from September 8, 2023, noon – 1:00 pm |
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Publishing ELSI in Scientific Journals Kyle Brothers, MD, PhD (Norton Children’s Research Institute & University of Louisville) Discussant: Mildred Cho, PhD (Stanford University) Moderated by: Maya Sabatello, LLB, PhD (Columbia University) Abstract: Panelists considered the promise and challenges of publishing ELSI (ethical, legal, and social implications) research in scientific and medical journals. They discussed formats for ELSI manuscripts and interdisciplinary issues (e.g., use of medical or sociopolitical language and concepts). They also recommended where to place articles reporting quantitative, qualitative, or normative/policy ELSI research. The Center for ELSI Resources and Analysis TraineeHub sponsored by NHGRI Click to view recording September 7, 2023, noon – 1:00 pm |
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The Urgent Need for “Nutrition Facts Labels” for AI Abstract: Artificial Intelligence (“AI”), particularly its subset Machine Learning (“ML”), is quickly entering medical practice. The US Food and Drug Administration has already cleared or approved more than 520 AI/ML-based medical devices, and many more devices are in the research and development pipeline. AI/ML-based medical devices are not only used in clinics by health care providers but are also increasingly offered directly to consumers for use, such as apps and wearables. Despite their tremendous potential for improving health care, AI/ML-based medical devices also raise many regulatory issues. Sponsored by the Bioethics & Artificial Intelligence Affinity Group of the American Society for Bioethics and Humanities Recording from August 21, 2023, 9:00 – 10:00 am |
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Grantsmanship Series - The Writing and Uses of Specific Aims Amy L. McGuire, JD, PhD (Baylor College of Medicine) Moderated by: Maya Sabatello, LLB, PhD (Columbia University) Abstract: The Specific Aims section of grant proposals is only one page, but it is one of the hardest to write, with many uses beyond the grant submission itself. This session explored the goals, content, and uses of Specific Aims, provided hands-on exercises to engage with a study’s objectives, and considered approaches and best practices to develop a persuasive Specific Aims page. CERA TraineeHub sponsored by NHGRI Click to view recording July 19, 2023, 4:00 – 5:00 pm |
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Next of Kin Authorization for Research After Consent for Organ Donation Gary Marklin, MD (Chief Medical Officer at Mid-America Transplant) Rich Rothweiler (Director, Organ Procurement at Mid-America Transplant) Wendi Rose (Manager of Family Support at Mid-America Transplant) Jennifer Davis (Donor Family Member) Rolanda Schmidt, PhD (Donor Family Member) Abstract: This webinar provided an overview of the APOLLO Study, which studies kidney donors and kidney transplant recipients for variants of the apolipoprotein L1 gene to determine whether they impact outcomes. Panelists addressed categories of deceased donor research and the importance of next-of-kin research authorization, as well as best practices for next-of-kin research authorization, grounded in perspectives of donor family members. Sponsored by the APOLLO Dissemination Working Group and the American Society of Transplantation Click to view recording, from July 17, 2023, 3:00 – 4:00 pm |
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Population Descriptors in Genomic Research: Applying the NASEM Recommendations Molly Przeworski, PhD (Columbia University) Moderated by: Dorothy Roberts, JD (University of Pennsylvania) History demonstrates that the potential for typological thinking continues to be a hazard of genetic research involving human groups. In 2022 the NIH commissioned a NASEM study on the Use of Race, Ethnicity, and Ancestry as Population Descriptors in Genomics Research to determine if and when race, ethnicity, ancestry, and other population descriptors should be used and why. In this ELSI Friday Forum, NASEM committee members discussed the report’s recommendations. What are population descriptors? How can their selection entrench typological thinking and undermine scientific rigor? How can we better align the appropriate use of population descriptors with genomic research objectives? ELSI Friday Forum sponsored by NHGRI Click to view recording July 14, 2023, noon – 1:00 pm |
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What Should ChatGPT Mean for Bioethics and Education? Vasiliki Rahimzadeh, PhD Sponsored by the Bioethics & Artificial Intelligence Affinity Group of the American Society for Bioethics and Humanities Click to View Recording, from June 28, 2023, 11:00 am – noon |
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ChatGPT, Knowledge, and Misinformation: Technology and Its Many Impacts on Health, Wellness, and Society Renée Cummings, MA, MS (UVA School of Data Science) Moderated by: Anne Zimmerman, JD, MS, CIPP/US, CEET (Voices in Bioethics) Abstract: Technological advances greatly impact health and the social determinants of health. AI ethicist and criminologist Renée Cummings and researcher Michael Scroggins discussed AI and other technologies that are changing the landscape of society, health, wellness, and scientific research. The discussion was moderated by Voices in Bioethics Editor-in-Chief Anne Zimmerman. This event celebrated 10 years of Voices in Bioethics, the online journal published by Columbia University's Masters in Bioethics Program with Columbia Libraries. Co-sponsored by the Columbia University Masters in Bioethics Program Click to view recording, from June 21, 2023, noon – 1:00 pm |
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2nd Annual Pharmacoequity Conference Pharmacoequity describes a health system where all patients have access to the highest quality, evidence-based medications, regardless of race, ethnicity, or social standing. The 2nd annual Pharmacoequity Conference was dedicated to convening professionals, clinicians, researchers, and students who were interested in learning about and advancing pharmacoequity. This conference showcased the breadth of pharmacoequity research and policy work taking place at the University of Pittsburgh and nationwide, as well as actions health care payers are taking to reduce health care and access disparities. The keynote address was given by Jacinda Abdul-Mutakabbir, PharmD, Assistant Professor of Clinical Pharmacy at the University of California San Diego in the Skaggs School of Pharmacy and Pharmaceutical Sciences, and in the Division of the Black Diaspora and African American Studies. Sponsored by CP3, the Center for Pharmaceutical Policy and Prescribing Click to View Recording, from June 9, 2023, 9:00 am – 3:00 pm |
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Ethics of Gene Editing and Genetic Selection Abstract: This presentation compared the ethics of gene editing in human beings to the genetic selection of embryos. It discussed moral obligations in pursuing human gene editing research and selecting the best child (procreative beneficence). It then outlined a translational pathway for ethical first-in-human trials of gene editing and considered the ethics of the enhancement revolution, particularly in respect to bioenhancement. Presented by the University of Malaya with support from the Fogarty International Center of the United States at the National Institutes of Health in collaboration with the Johns Hopkins Berman Institute of Bioethics Recording, from June 8, 2023, 8:00 – 9:00 am |
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ELSI Research and the New NIH Data Management and Sharing (DMS) Policy Nicole C. Lockhart, PhD (Program Director, Division of Genomics and Society) Rene Sterling, PhD, MHA (Program Director, Division of Genomics and Society) Elena M. Ghanaim, MA (Policy Advisor for Data Science and Sharing, Office of Genomic Data Science) Abstract: The panel presented an overview of the NIH Data Sharing and Management Policy as well as the application of the DMS Policy to ELSI Research. Hosted by The National Human Genome Research Institute (NHGRI) Click to View Recording, from May 23, 2023, 1:00 – 2:00 pm |
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Equitable Inclusion of Persons with Disabilities in Research Abstract: Approximately 25 percent of adults in the US have one or more cognitive, visual, hearing, mobility, developmental, or intellectual impairments. In addition, many people will develop a disability at some point in their life, may be caring for a loved one with a disability, or both. But the exclusion of people with disabilities from clinical trials persists, despite protections under the Americans with Disabilities Act Section 504 of the Rehabilitation Act, the Secretary’s Advisory Committee on Human Research Protections (SACHRP), and other federal and state guidance. In the October 2022 special issue of Health Affairs on disability and health, Willyanne DeCormier Plosky and colleagues reported that protocol eligibility criteria frequently excluded people with disabilities. Few studies included either justifications for these exclusions or descriptions of accommodations that were offered, provided, or permitted. Dr. DeCormier Plosky discussed these findings in this ethics grand rounds. Sponsored by the University of Minnesota Center for Bioethics Click to View Recording, from April 28, 2023, noon – 2:00 pm |
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CARE Panel: Building Ethical Relationships within Research Teams Tamar Gur, MD/PhD Zakee Sabree, PhD Abstract: How do we create a research environment that is both conducive to scholarship as well as equitable in educational opportunities and career advancement for all members of the team? This panel explored how to detect and address the potential vulnerabilities that certain members of the research team may experience - such as those that arise through student or immigration status, membership in a group that has been historically excluded from academia, or becoming a new parent. Sponsored by The Ohio State University Click to View Recording, from April 24, 2023, noon – 1:00 pm |
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ChatGPT Wrote this Title: Exploring the Impact of AI on Our Minds and Society Abstract: A few months ago, a seemingly revolutionary technological milestone occurred when ChatGPT was released online. ChatGPT and other instances of what are called "generative artificial intelligence" (or generative Al) are programs that actually generate text, images, audio or other content for users. Ask ChatGPT to provide a premise for a sitcom, a poem in the style of Emily Dickinson, or an explanation of the basics of curling, and lines of text start materializing on the screen, seeming eerily like those that an expert human would write (although not always correct!). There has been much debate about how these programs may pose a threat or an opportunity for our education system. This session presented the research-informed ideas of several Pitt experts on the broader topics of how this technology may affect the way we think, write and speak, and the associated impacts on society. Science Revealed Lecture Series presented by the Kenneth P. Dietrich School of Arts & Sciences Click to View Recording, from April 19, 2023, 7:00 – 8:00 pm |
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The Ethics of Consent for Studies Involving Temporary Treatment of Chronic Pain Abstract: Neuroprostheses are devices that stimulate and record from the nervous system to improve function after injuries such as amputation and spinal cord injury. Researchers in Dr. Fisher’s lab develop implantable systems to restore sensations from the missing limb and reduce phantom limb pain after amputation. While these studies have the potential to have an important impact on the lives of people with amputation, individual study subjects may receive little or no direct benefit for their participation in research, and the implantable devices are removed at the end of the study. Often, participants in these studies present with severe phantom limb pain, which they report as an important motivating factor in their participation. In this informal talk, Dr. Fisher introduced some of the challenging ethical issues that arise during the consent process with research subjects living with chronic pain, especially for a study that may only provide temporary pain relief. Sponsored by the Center for Bioethics & Health Law and the Research, Ethics and Society Initiative (RESI) of Pitt Research Click to View Recording, from April 14, 2023, noon – 1:00 pm |
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The Genie Is Out of the Bottle for Polygenic Screening of Embryos: Where To From Here? Gabriel Lázaro-Muñoz, PhD, JD Moderated by: Anna Lewis, DPhil, Research Associate, Safra Center for Ethics, Harvard University Abstract: A growing number of private companies are offering prospective parents using in-vitro fertilization polygenic screening of embryos to identify the risks for developing complex diseases later in life. Children have already been born from IVF cycles that integrated this screening. The use of polygenic risk reports for children and adults in clinical care raises unique questions about parental reproductive freedom as well as the forces and societal values that mobilize this practice. What is the validity of polygenic screening? Should polygenic screening of embryos become a standard offering as part of IVF, alongside currently common screens for aneuploidies? What are the risks? How should the conditions for which polygenic screening of embryos are offered be determined, and by what criteria? This ELSI Friday Forum explored the ELSI challenges of polygenic screening of embryos and stakeholders’ perspectives on this emerging practice to identify its risks, limitations, and potential benefits for families and society at large. ELSI Friday Forum sponsored by NHGRI Click to View Recording, from March 10, 2023, noon – 1:00 pm |
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What Makes Your Research Trustworthy? Threats and Opportunities Speakers: Rebecca Keiser, PhD, MSc (National Science Foundation) Derek Griffith, PhD (Georgetown University) Veronique Kiermer, PhD (Public Library of Science) Brian Nosek, PhD (University of Virginia) Angela Byars-Winston, PhD (University of Wisconsin–Madison) Abstract: The conference reflected on the importance of optimizing and signaling the trustworthiness of research. Trustworthiness is necessary in order to maintain the trust of colleagues, participants, those who apply research findings, and the wider public. Speakers discussed the trust-related expectations of all these collaborators and audiences, including research funders, partners, participants, trainees, and journals. Sponsored by the University of Minnesota’s Center for Bioethics Click to View Recording, from March 1, 2023, 10:00 am – 4:00 pm |
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The Ethics and Regulation of AI and Chat GPT ChatGPT has roiled nearly every sector since its release in November. Hype abounds but so do real-world implications. The Center for Governance and Markets and Pitt Cyber hosted this lively discussion on the ethical implications and potential for regulation of generative AI. Click to View Recording, from February 27, 2023, 4:00 – 5:00 pm |
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How Hearing Loss Impairs Communication in Lively Social Settings Abstract: Communicating in a social setting relies upon the ability to focus on an important sound amid competing sounds. In healthy, normal-hearing listeners, complex negotiations between volitional, top-down attention and involuntary, bottom-up attention allow listeners to focus on and understand whatever talker matters in a given moment. Yet, even a modest hearing impairment can hamstring a listener faced with such a task. This talk explored why sensory deficits can impair everyday communication, especially when a listener is trying to follow a conversation in a social setting, and the implications of this impairment. Sponsored by the Research, Ethics and Society Initiative Click to View Recording, from February 24, 2023, noon – 1:00 pm |
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Quantum Nanowires: A case study on reproducibility in natural sciences Abstract: Three years ago, Dr. Frolov and a friend found major problems in a paper in Nature. The paper has since been retracted, along with another Nature paper. Several more are recommended for retraction, are under expressions of concern, or pending corrections. In this talk, Dr. Frolov described his experience with colleagues, including close friends, university administrators, journal editors, and funding managers, as he pursued investigation of the paper’s problems. He shared the lessons he learned. These included learning how slow things proceed, discovering processes and approaches that don’t work, and recognizing the need for further reforms regarding the culture and attitudes concerning unreliable research. Dr. Frolov found that the reproducibility crisis is in full swing in the natural sciences, which traditionally consider themselves insulated due to their perceived rigor. Dr. Frolov began formulating what changes are desirable; some are very technocratic, such as total data sharing and post-publication peer review. Some are more difficult to implement, such as changing the incentives, the business models, and the employment habits in the sciences and academic publishing. He argued that without taking care of the scientific process itself, we cannot put much value on the science it produces. Sponsored by the Center for Philosophy of Science, Love Data Week, and the Research, Ethics and Society Initiative Click to View Recording, from February 10, 2023, noon – 1:00 pm |
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Indigenizing Genomics and Advancing Indigenous Data Sovereignty Krystal Tsosie, PhD, MPH, MA (Arizona State University, Native BioData Consortium) Moderated by: Josephine Johnston, LLB, MBHL (The Hastings Center) Abstract: Indigenous peoples have embodied genetic understanding within their knowledge systems long before encountering settler-science constructs. Through colonization, these Indigenous knowledge systems were displaced by western science, and Indigenous participation in scientific activity was minimized and devalued. Now, genomics is at the leading edge of decolonizing policy and cultural changes, rapidly moving to a model where research is led by and for Indigenous peoples. Genomics research, for example, is increasingly led by Māori scientists, communities, and companies, which provides employment and skills growth. Mātauranga Māori (which was the dominant knowledge system in Aotearoa/New Zealand) focused on genomics is beginning to be taught in schools and universities. Indigenous data scientists are also advancing ethical frameworks and consent models, and using digital data tools such as artificial intelligence and machine learning approaches (e.g., blockchain and federated systems), to ensure genomics equitably benefits Indigenous people. The speakers described the development of Indigenous-led genomics in Aotearoa/New Zealand and the United States, and discussed the implications for ELSI research and practice related to genetics and genomics. Sponsored by the ELSI Friday Forum Click to View Recording, from February 10, 2023, noon – 1:00 pm |
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The Promise and Perils of Social and Behavioral Genomics Abstract: How has genetic evidence played a role in events such as the 2022 Buffalo mass shooting and extremist violence? How has the incomplete reckoning of the history of scientific racism and eugenics in genetics/genomics led to harmful ideologies and compromised scientific integrity? A recent news feature similarly explores the implications from this field of research. Now more than ever, scientists and scholars must understand these connections to safeguard human health and safety. This program discussed social and behavioral genetics and genomics, its benefits, limitations, and potential for misuse. Panelists discussed strategies for scientists to combat misinformation, disinformation, and misuse of scientific findings. Sponsored by the National Human Genome Research Institute Click to View Recording, from January 25, 2023, 1:00 – 4:15 pm |
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Studying Real-World Behavior in a Hospital Environment Abstract: The hospital environment provides unique opportunities to study human behavior, its physiological underpinnings, and how it is affected by pathology. For example, this environment provides the opportunity to study how real-world behavior and various aspects of physiology interact, and how these brain-body-behavior interactions are modulated by clinical pathology. Such research can also lead to novel insights into doctor-patient communication. Along with these opportunities comes a host of ethical considerations around consent and privacy for patients, clinical staff, and hospital visitors. This RESI seminar discussed recent work studying the neural basis of social behavior using simultaneous behavioral and neural recordings in epilepsy patients while they have conversations with friends, family, and experimenters, as well as general ethical considerations surrounding natural behavioral recordings in a hospital setting. Sponsored by the Center for Bioethics & Health Law and the Research, Ethics and Society Initiative (RESI) of Pitt Research Click to View Recording, from January 19, 2023, noon – 1:00 pm |
2022
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Embodied Narratives: Protecting Identity Interests through Ethical Governance of Bioinformation Abstract: Increasing quantities of information about our health, bodies, and biological relationships are being generated by health technologies, research, and surveillance. This escalation presents challenges to us all when it comes to deciding how to manage this information and what should be disclosed to the very people it describes. This talk discussed the ethical imperative to take seriously the potential impacts on our identities of encountering bioinformation about ourselves. Dr. Postan argued that identity interests in accessing personal bioinformation are currently under-protected in law and often linked to problematic bio-essentialist assumptions. Drawing on a picture of identity constructed through embodied self-narratives, and examples of people's encounters with diverse kinds of information, she addressed these gaps. Her book provides a robust account of the source, scope, and ethical significance of our identity-related interests in accessing – and not accessing – bioinformation about ourselves, and the need for disclosure practices to respond appropriately. Future of Law in Technology and Governance Scholarly Seminar co-sponsored by the Center for Governance and Markets and the Center for Bioethics & Health Law Click to View Recording, from December 1, 2022, 3:00 – 4:00 pm |
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Doctors Gave the Orders: 75 Years After The Nuremberg Medical Trial—A Symposium Abstract: The Nuremberg Medical Trial, during which Nazi physicians were tried for war crimes and profound violations of the most basic ethical tenets of the profession, took place 75 years ago, and led to the promulgation of the Nuremberg Code. Many health care professionals, lawyers, and ethicists are aware of the atrocities physicians committed in the concentration camps, but few understand the extent of the involvement of German physicians in the National Socialist movement or connect that history to research and clinical care today. This Symposium featured international experts in history, law, and ethics who explored the trial and the events that led to it in detail, and offered insights into the abiding relevance of the Nuremberg Medical Trial to medicine today. Co-sponsored by The Kennedy Institute of Ethics and The Pellegrino Center for Clinical Bioethics at Georgetown University Click to View Recordings and Transcripts, from December 1 – 2, 2022 |
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Are Robots Racist? Rethinking Automation and Inequity in Healthcare With Meghna Chakrabarti, Host and editor of WBUR’s On Point Abstract: As algorithms supplement human decision-making across a variety of sectors, questions of ethics and equity have come quickly to the forefront. How might automated systems create or entrench unethical social practices and dynamics? How are related disparities worsening health gaps? Ruha Benjamin, PhD, an expert on race and technology with a focus on healthcare, was joined in a conversation to address these issues and more with NPR and WBUR radio host Meghna Chakrabarti. The Greenwall Foundation’s William C. Stubing Memorial Lecture co-sponsored by the NYU School of Global Public Health Click to View Recording, from November 15, 2022, 6:30 – 7:30 pm |
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Genetics and AI: Group Privacy and Fairness Sandra Wachter, PhD, LLM Moderated by: Nicholson Price, JD, PhD, Professor, University of Michigan Law School Abstract: Big data and artificial intelligence are growing more pervasive and are creating new, complex links between individuals and the many groups to which they might belong, including groups no one might have previously thought of as a “group.” How should we think about questions of group privacy, discrimination, and group identity in this new world? Does it matter whether algorithms used in health care focus on identified groups that have been designated as protected classes, rather than more precisely (or amorphously) defined groups that may or may not align with some protected class boundaries? What does it mean to protect the privacy of an individual when big data and algorithms can predict many things from membership in groups (and group membership from many individual things)? How should providers, bioethicists, data scientists, and legal scholars take account of these changing issues? The panel discussed these questions and more at the intersection of groups, genetics, and AI. Sponsored by the ELSI Friday Forum Click to View Recording, from November 11, 2022, noon – 1:00 pm |
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Can Blockchain Solve the Dilemma in the Ethics of Genomic Biobanks? Abstract: In discussions of the ethics of genome collections and biobanks, the main worry about whether we are permitted to collect and use individuals’ genomic and genetic data is the potential for the violation of individuals’ right to informational privacy. Yet, if we do not permit these endeavors, we risk giving up on the future benefits of biomedical research. In this talk, Dr. Racine described a private venture in blockchain genomics that seeks to provide an apt solution to concerns about potential privacy violations in genome collections and biobanks. She also provided some reasons to doubt the kind of solution to the dilemma that such start-ups propose. She argued that the sort of autonomy that grounds the value of the right to informational privacy cannot be secured with blockchain technology alone. Further, she discussed whether future benefits that result from biomedical research dependent on genomic databases will outweigh the costs and claimed that it is reasonable to think that future net benefits will be gained from research on such databases. Future of Law in Technology and Governance Scholarly Seminar co-sponsored by the Center for Governance and Markets and the Center for Bioethics & Health Law Click to View Recording, from November 10, 2022, 3:00 – 4:00 pm |
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Embracing Privacy and Equity for Digital Mental Health Abstract: Digital mental health technologies, such as mental health apps and wearables, are expected to provide much-needed improvements in diagnosis, access and treatment for mental health care. However, issues of privacy and equity need to be actively engaged in the development of digital mental health so that these tools do not exacerbate existing inequities in mental health care. Minoritized subpopulations are under-represented in the research and development process for digital mental health development, which leads to tools that do not serve the needs of diverse communities and populations. Drawing from qualitative interviews conducted with digital mental health technology developers, clinicians, and users, this talk examined challenges for developing tools that support privacy, access and equity in digital mental health. Co-sponsored by the Sara Fine Institute, Center for Bioethics & Health Law, and Research, Ethics and Society Initiative in conjunction with the Year of Emotional Well-being For access to the recording, please contact emm225@pitt.edu at the Sarah Fine Institute. November 4, 2022, noon – 1:00 pm |
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Foreign Links of Students, Faculty, and Universities: Collaboration, Theft, or Both? Abstract: US academic institutions manage myriad international collaborations, and host tens of thousands of foreign students annually, to the benefit of the faculty, students and institutions. Moreover, many US academic researchers include foreign students in their federally funded research projects. US grant-making agencies have traditionally encouraged these types of exchanges. However, there is now concern from these same US federal agencies that in limited cases, these relationships are being exploited to exfiltrate pre-publication research results to foreign adversaries, in violation of US research integrity principles. In light of this concern, should universities reconsider how they manage these collaborations, and work with foreign students, in view of some sovereign actors’ aggressive efforts to acquire US technology? Research, Ethics and Society Lecture Series Click to View Recording, from October 28, 2022, noon – 1:00 pm |
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Ethics at the Intersection of Academic Research and Human Rights Practice Dr. Aronson focused on a few of the many ethical and moral dilemmas that he has faced working at the intersection of social science-oriented research and human rights practice for the past fifteen-plus years. Examples include his obligations to people he is interviewing about very painful moments in their lives (i.e., the deaths of loved ones); feelings of recurring regret about advancing his own career through the gathering and analysis of other peoples’ suffering; and, more generally, his responsibilities to the people he interacts with who are in far more precarious positions than he is. Dr. Aronson discussed the actual ethical principles that underlie what he experiences as feelings or thoughts that ‘keep him up at night.’” Research, Ethics and Society Seminar Series Click to View Recording, from October 21, 2022, noon – 1:00 pm |
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Advocacy and Allyship in ELSI: Opportunities and Challenges Abstract: Objectivity is a weight-bearing pillar in scientific inquiry, a norm to ensure that research and its outcomes are “value free” and unaffected by subjective value judgment. Yet ELSI research, as a field, is also poised to engage, take stands, and advocate for science-based policies and courses of actions that respond to societal needs. ELSI researchers and professional genetic associations face vexing questions about how to balance the two goals and responsibilities, especially amid intense political polarization. Building on real-world events, such as the Dobbs decision and Buffalo shooter’s manifesto, and statements by professional genetic organizations such as the American Society for Human Genetics and Association of Professors of Human and Medical Genetics, this webinar explored the value, importance, upsides, and downsides of advocacy and allyship in ELSI research. Sponsored by the ELSI Friday Forum Click to View Recording, from October 14, 2022, noon – 1:00 pm |
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Division of Behavioral and Social Sciences and Education: Where Science and Society Meet The 2022 Henry and Bryna David lecture featured Dr. Shirley Malcom, who brought her considerable expertise in diversity, equity, and inclusion in STEM education; in public science literacy; and on the importance of behavioral and social sciences in evidence-based public policy to a talk entitled "DBASSE: Where Science and Society Meet." Sponsored by DBASSE and Issues in Science and Technology Click to View Recording, from October 12, 2022, 5:00 – 6:30 pm |
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The Anatomy of Injustice: Interventions to Treat What Ails Us Rupa Marya—co-author (with Raj Patel) of Inflamed: Deep Medicine and the Anatomy of Injustice (2021)— addressed themes from the book, which is described thus: “Inflamed takes us on a medical tour through the human body--our digestive, endocrine, circulatory, respiratory, reproductive, immune, and nervous systems. Unlike a traditional anatomy book, this groundbreaking work illuminates the hidden relationships between our biological systems and the profound injustices of our political and economic systems. Inflammation is connected to the food we eat, the air we breathe, and the diversity of the microbes living inside us, which regulate everything from our brain's development to our immune system's functioning. It's connected to the number of traumatic events we experienced as children and to the traumas endured by our ancestors. It's connected not only to access to health care but to the very models of health that physicians practice.” (Farrar, Straus and Giroux, publisher) Research, Ethics and Society Lecture Series Click to View Recording, from October 11, 2022, 6:00 – 7:30 pm |
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The China Initiative: A Discussion of Lessons Learned by the Government The China Initiative was an effort by the United States Department of Justice to identify and prosecute those who inappropriately transferred American intellectual property and technology to China. Launched in November 2018, the initiative was intended to combat economic espionage. However, it was criticized as ineffective, racially biased, and inconsistent. The Department of Justice announced the end of the program on February 23, 2022, amid criticism of unfair treatment of Chinese Americans and residents of Chinese origin. Click to View Recording, from October 10, 2022, 11:00 am – noon |
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Open Health Natural Language Processing (OHNLP) Initiative: A Collaborative Effort towards Health NLP under the AI Ethics Framework Dr. Liu explained why, in human-centric Artificial Intelligence (AI), under the AI ethical framework, pursuing a pure data-driven approach towards natural language processing (NLP) is not ethical. The risk is “losing humanity.” Language knowledge engineering is necessary for applying ethical NLP technologies to foster clinical and translational research. This talk described the Open Health Natural Language Processing (OHNLP) Initiative, a collaborative effort funded by the National Center for Advancing Translational Sciences (NCATS), to promote health NLP under the AI ethics framework. Health Informatics Ethics Grand Rounds and SHRS Bioethics and Health Humanities Lecture, co-sponsored by the Center for Bioethics & Health Law Click to View Recording, from October 7, 2022, noon – 1:00 pm |
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Social Media and Youth Suicide Prevention: Ethical Concerns for Research As science continues to expand its use of big data to develop predictive risk algorithms for a wider range of health outcomes, we must pause to consider the ethical issues inherent to this type of research. In the field of youth suicide prevention, social media provide immense quantities of data generated by teens and may hold the potential for developing algorithms capable of predicting suicidal risk. This discussion addressed ethical quandaries faced in youth suicide prevention research involving the collection and mining of social media data. Research, Ethics and Society Initiative Seminar Series Click to View Recording, from October 6, 2022, noon – 1:00 pm |
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Irreducible Subjects: Disability and Genomics in the Past, Present and Future This symposium addressed how disability and ability are connected to both historical and present-day eugenics, scientific and structural racism, heteronormativity, misogyny, imperialism and colonialism. Speakers considered how scientific program funding language — and NIH communications — can better address the complexity of disability, health and wellness. More information here. Hosted by The National Human Genome Research Institute (NHGRI) and The State University of New York at Buffalo Center for Disability Studies Click to View Recording, from October 6 – 7, 2022 |
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Understanding and Building Technology with and for Transgender People This talk covered two related research projects, both in transgender voice training technology. First, Dr. Ahmed presented her research on understanding mobile voice training apps designed and marketed specifically to trans people. She showed how she used the “walkthrough method” to excavate the underlying ideological frameworks of these apps, and to grapple with how to make sense of technologies that may help some trans people, but that also reify the normative authority of clinical and technoscientific knowledge as the primary way to understand oneself and one’s gender. She then discussed another project, in which she collaboratively designed and developed a new voice training app with the intention of addressing some of the flaws in existing apps. Importantly, however, she showed this design was flawed too, both in terms of the product and the process—even though the design team was entirely composed of queer and trans people. Much like the water in which we swim or the air we breathe, it is impossible to ignore the political, social, and economic contexts in which technology is built. Dr. Ahmed concluded that aspiring technologists and scientists must keep this tension in mind as we do our work. Research, Ethics and Society Initiative Seminar Series & Gender and Science Conversation Series Click to View Recording, from September 22, 2022, noon – 1:00 pm |
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Research Funders and the Promotion of Quality in Research: From Principles to Practice Funding organizations worldwide dedicate substantial resources to ensuring that only research of the highest rigor and quality receives funding. Their policies, evaluation criteria, selection processes, and programs directly impact how researchers plan, conduct, analyze, and disseminate their research. As major gatekeepers, funders play a key role in fostering transparency and integrity of research and innovation, while restricting questionable and poor research practices. What strategies of funders have been effective (or ineffective) in eliciting support from researchers and buy-in from institutional leadership? Should the stakeholders of the research ecosystem cooperate more closely when striving to improve research quality? Panelists: Host: Presented by the Einstein Foundation Recording, from September 12, 2022, 5:00 – 8:00 pm |
The voice of the public has generally been left out of policy debates on the governance of AI. In October 2023, Syracuse University Professor Baobao Zhang partnered with the Center for New Democratic Processes (CNDP) to conduct the Public Assembly on High Risk AI (AI Assembly).