ELSI Friday Forum

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The Earth BioGenome Project (EBP) aims to collect whole genome sequences from all eukaryotic species on Earth before 2028 and produce an open DNA database. The African BioGenome Project (ABP) is a pan-African effort to build capacity and infrastructure to generate, analyze and deploy genomics data for the improvement and sustainable use of biodiversity and agriculture across Africa. What are ELSI the issues associated with these projects? Can data and samples be collected, shared, and used in ways that appropriately recognize their provenance and potential? This session considered how the benefits of biodiversity genomics can be realized locally and internationally.

Moderator: Patrick Keolu Fox, PhD

Panelists: Melissa Goldstein, JD & Sally M. Katee

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Genetic screening is crucial for identifying genetic risk factors for disease, but marginalized groups often have low participation due to lack of access, awareness, and mistrust of healthcare systems. There is a need for intentional collaboration with community partners to address these concerns and allow community voices to actively participate in the design and implementation of programs. The Cleveland African American Prostate Cancer Project (CAAPP) is a partnership of academics, clinicians, and community partners working together to combine prostate cancer and genetic screening, leveraging local barbershops as trusted hubs. Barbers were trained as health advisors, connecting Black men over 40 with screening services. This session explored how building relationships, leveraging existing clinical and community partners, and utilizing community health navigators can overcome barriers like trust, cost, and data ownership, increasing participation and improving preventive health measures in marginalized communities.

Moderator: Marsha Michie, PhD

Panelists: Sydney N. Evans, MSW, C-CHW & Erika S. Trapl, PhD

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This ELSI Friday Forum was co-hosted with The Broad Institute.

Community engagement is increasingly seen as a necessary component of genetic and genomic research. One major rationale for community engaged genetic research is to assure that benefits of research are aligned with community needs and goals. Assuring broad benefits also requires broad representation in genetic and genomic research participant populations. Organizations such as the American Society for Human Genetics have put forward guidance to advance community-engaged research, which was aimed at the scientific community. However, there are structural barriers to the advancement of community-engaged research that may require the action of institutions such as scientific journals, research funders, and academic research organizations. This session addressed the ways that structural and systemic factors can lower barriers to effective community engagement in genetic and genomic research.

Moderator: Heini Natri, PhD

Panelists: Ishita Das, PhD, PMP; Alycia Halladay, PhD; and Celia van der Merwe, PhD

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Publicly-funded researchers frequently transfer their gene therapy and gene-editing medical research to venture capital-funded startups for clinical development. In tandem, the public sector financial crisis in many countries has meant that partnerships with commercial entities are used to leverage the full potential of publicly-held genomic data. However, public-private partnerships in the genomics translational pipeline raise several key questions. Which benefits should be returned to the public, if any? How should products be priced? How should data be managed? Does involvement of publicly funded scientists in the commercial sector conflict with the commitment to deliver societally beneficial innovation?

Moderator: Philip J. Brooks, PhD

Panelists: John Conley, JD, PhD & Eva Winkler, Prof, Dr.med., Dr.phil.

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Bioethics as a field was catalyzed by grave injustices such as the US Public Health Service Untreated Syphilis Study at Tuskegee. Similarly, a major rationale for ELSI was to address the injustices perpetrated and rationalized by the growing science of human genetics. However, bioethics and ELSI attention to justice issues, especially those affecting marginalized populations, has been lacking. To facilitate a stronger focus on justice, leading bioethics and ELSI scholars have made recommendations for action, calling for greater diversity in the bioethics/ELSI workforce, and reinforcing bioethics education. In this session, we explored these recommendations in practical terms, discussed how or if they might need to be expanded to address broader types of diversity, and what challenges will be posed to achieving them.

Moderator: Jim Tabery, PhD, MA

Panelists: Faith Fletcher, PhD, MA, & Debra Mathews, PhD, MA

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How can genetically-incorporated art examine, highlight, and challenge existing social constructs such as the formation of racial identity? This ELSI Friday Forum explored this question and focused on the intersection between art and genetics. Panelist, Lucy Kim, Associate Professor in Art and Painting, discussed a unique process she created to use melanin from genetically-modified bacteria to develop images. This process of screen printing with melanin raises questions about how race is ascribed, its meaning, and connection to something as arbitrary as pigment. Panelist, Paul Vanouse, Professor of Art, discussed his interactive biomedia installation in which extracted DNA samples “run” through gel electrophoresis to examine the racial identity of his multi-racial family’s Jamaican descent. Moderated by Rachel Adams, Professor of English and Comparative Literature.

Moderator: Rachel Adams, PhD

Presenters: Lucy Kim, MFA & Paul Vanouse, MFA

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Scientists from dominant genomic institutions are beginning to recognize the ways in which they have been and continue to be non-inclusive and harmful to marginalized communities, especially to Indigenous groups. In response, these groups have established programs worldwide that are based on Indigenous knowledge, expertise, and governance to move toward decolonization of genomics. These programs are designed to disrupt dominant approaches, build Indigenous capacity and scientific literacy, including laboratory, classroom, and field training in genomic sciences, ethical and social implications, and Indigenous knowledge. Furthermore, as such data have become the targets of commercialization and Native peoples seen a bioproperty, international and intersectional concepts of law have increasingly been one of SING's points of discussion. This approach in SING goes beyond simply integrating Indigenous perspectives; it actively develops and supports Indigenous science. By doing so, it aims to provide effective and sociopolitically appropriate solutions to today’s most pressing scientific and ethical questions.This session described the Summer internship for INdigenous peoples in Genomics (SING), the distinctive features of their educational programs, and related research and community collaborations that aim to decolonize and make useful genomics for Indigenous Peoples.

Moderator: Kim TallBear, PhD

Presenters: Elizabeth Nelson, PhD & Joseph Yracheta, MS, DrPHc

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In an era where genomic medicine promises to transform healthcare with cutting-edge treatments and personalized care, it is crucial to ensure these advancements are accessible to all, particularly historically marginalized populations. In collaboration with Black in Genetics (BiG), this forum discussed the challenges hindering access to genomic medicine for marginalized groups, with a special focus on Black populations. The talks discussed how to include diverse ethnic groups to enhance research designed to identify novel genetic risks and gene network modifications. Watch our discussion with Melissa Davis, PhD, Director of the Institute of Translational Genomic Medicine at the Morehouse School of Medicine and Shawneequa Callier, JD, MA, Associate Professor of Clinical Research and Leadership at the George Washington University, moderated by Markia Smith PhD, founding BiG President. This forum focused on how to address systemic bias in the analysis and application of genomic data to improve access and inclusion for Black communities and other historically marginalized groups. Key questions included: How do researchers design genomic studies that enhance access to interventions? How does capacity building relate to equity and transformative genomic medicine? What are the barriers in translational research and technology development to delivering precision medicine to underserved populations? How are research questions prioritized in the course of research that address the needs of communities? How can interdisciplinary collaboration address health inequity? We invite you to watch this forum on overcoming the barriers to equitable access in genomic medicine.

Moderator: Markia Smith, PhD
Presenters: Shawneequa Callier, MA, JD & Melissa Davis, PhD

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How can ELSI center justice in science to promote to transformative outcomes? Since its inception, ethical, legal, and social implications (ELSI) research has been pivotal in centering ethical considerations in the development of emerging science and technologies. The ELSI landscape continues to grow alongside technological and scientific developments; however there is little known on how the integration of ELSI expertise and knowledge impacts the trajectory of scientific inquiry and outcomes? In this ELSI Friday Forum, our panelists discussed models of ELSI integration and the potential for transformative science. In addition to measuring the impact, this session discussed assumptions, structures, and relationships that influence how ELSI research is conducted. Our panelists brought their perspectives from in and out of the US and their experience as funders and researchers. Watch this ELSI Friday Forum, as our experts engaged in a conversation about the future of ELSI.

Moderator: Wesley Oakes, PhD
Presenters: Jenny Reardon, PhD & Paul Meller, MA, PhD

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Health research is undergoing a gradual but transformative shift, where patients and study communities no longer want to be passive participants in health research but active collaborators. However, the notion of patients as partners in health research in Africa raises unique challenges spanning both conceptualization and implementation. Drawing on recent community-engaged efforts to develop a framework for equitable engagement with sickle cell disease patient groups and researchers in Africa, this webinar explored the scientific, social and ethical rationales for this initiative, share the challenges that arise, and offer best practices for implementing a productive patient-researcher relationship in Africa.

Moderator: Tabia Henry Akintobi, PhD, MPH
Panelists:

• Ms Arafa Salim Said, Founder, Sickle Cell Disease Patients Community of Tanzania
• Ms Nabeelah Peerbhai, Executive Director, Sickle South Africa Support Group 
• Ms Nchangwi Syntia Munung, Bioethics Researcher, University of Cape Town

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The study of genetics has long been viewed through the lens of mass media and entertainment, and as the field has progressed in recent decades, its portrayal in media, television, and film has also evolved. Depictions of genetic sciences, from television series like CSI and Grey’s Anatomy to movies such as Blade Runner 2049 and X-Men sequels, convey messages about genetics research and technology to broad audiences. Whether bridging connections between technical genetic questions and broader societal issues in the media, or depicting genetic science tools like DNA testing in on-screen portrayals, genetics has surpassed its traditional methods of information delivery. Yet, how accurate are portrayals of genetics in television and film? How do representations of genetics in film and television influence public discourse on topics such as social identity, lineage, reproduction, and more? And importantly, how do these interpretations aid ELSI researchers in framing genetics information? This ELSI Friday Forum delved into the visual representations of genetics in television and film and their significance for ELSI research.

Moderator: Jay Clayton, PhD

Panelists: Sofia Bull, PhD & Everett Hamner, PhD

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In 2022 the US Supreme Court Dobbs vs. Jackson Women’s Health Organization overturned federal protection for abortion. This historic ruling not only relegates this authority to state legislatures but raises the possibility of restrictions on a range of reproductive technologies. Experts that joined this ELSI Friday Forum was reproductive endocrinologist and infertility specialist Sigal Klipstein and legal scholar and expert on assisted reproductive technologies Judith Daar on the changing regulatory landscape and the use of genomics in reproductive health. They discussed the implications of the Dobbs decision on testing of embryos, including for aneuploidy and single gene disorders, and polygenic disorders and traits, and the jurisprudence surrounding reproductive decision-making. This forum session was moderated by health law and reproductive justice scholar Kim Mutcherson.

Moderator: Kimberly Mutcherson, JD

Panelists: Sigal Klipstein, MD, FACOG and Judith Daar, JD

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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. Five decades after biotechnology became a Big Thing in Silicon Valley, both Cambridges, and elsewhere, concerns about pricing and access to health goods and services breed skepticism that the innovation ecosystem is fair and equitable. We 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.

Moderator: Alexis Walker, PhD

Panelists: Bob Cook-Deegan, MD and Brad Malin, PhD

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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 will explore the scientific and ethical considerations relevant to the widespread adoption of PRS for clinical care.

Malia Fullerton, DPhil (University of Washington) 

Alicia Martin, PhD (Broad Institute) 

Moderated by Alham Saadat, MS (Broad Institute, MIT, & Harvard University) 

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There are already many barriers to appropriate health care for transgender, gender diverse, and intersex (TGDI) communities. The recent surge in bills and 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. Fear of discrimination drives TGDI people to avoid clinical encounters and research participation, which leads to incomplete and inaccurate genetic data. This session will discuss responsibilities and actions of researchers and clinicians to support gender-affirming health care and research for TGDI people nationwide.

• Kellan Baker, PhD, MPH, MA (Whitman-Walker Institution)
• Kimberly Zayhowski, MS, CGC (Boston University School of Medicine)
• Moderated by Ina Amarillo, PhD, MSc (Penn State University)

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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 but also 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 better 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 explores 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.

• Murray B. Stein, MD, MPH (University of California San Diego, VA San Diego Healthcare System)

• Eric Juengst, PhD, MA (University of North Carolina at Chapel Hill)

• Moderated by Josephine Johnston, LLB, MBHL (The Hastings Center, University of Otago)

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Since application of the first individualized therapy in 2019, development of these bespoke treatments has expanded rapidly. Individualized therapies—including antisense oligonucleotides and others that may be developed—refer to products designed to treat one to a few individuals based on their specific molecular diagnosis. This technology offers 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 development and 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? In this ELSI Friday Forum, we explore these and other ethical considerations arising in this new therapeutic landscape.

• Ingrid Holm, MD, MPH (Boston Children's Hospital, Harvard Medical School)
• Alison Bateman-House, MPH, PhD (NYU Langone Health)
• Moderated by Meghan Halley, PhD, MPH (Stanford University)

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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?

• Ann Morning, PhD (New York University)
• Molly Przeworski, PhD (Columbia University)
• Moderated by Dorothy Roberts, JD (University of Pennsylvania)

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Rapid growth in genetic understanding presents challenges for expectant parents, now complicated by the Dobbs decision’s removal of federal constitutional protection for private reproductive decision-making. This panel will discuss two emerging issues for genetic information after Dobbs: prenatal gene therapy and law enforcement access to DNA repositories from residual newborn screening. Alta Charo, bioethics consultant and professor emerita at the University of Wisconsin, considered the novel possibility of prenatal gene therapy. Complicated by issues of prenatal surgery, prenatal gene therapy adds questions about risk and benefit for first in human studies using a rapidly evolving technology.  After Dobbs, the growing absence of legal abortion affects the risk/benefit calculus for parents in accepting this intervention, if termination is no longer available in the event of a failed effort that threatens to result in a severely impaired newborn. Natalie Ram, health law expert at the University of Maryland, considered how increasing interest in expanding newborn screening to whole genome or whole exome sequencing risks making this resource that much more attractive for law enforcement. Privacy protections are often lacking, police operate without significant legal constraints on their use of consumer genetic data, and some states offer inadequate protection from access for newborn screening resources. Legislation in Maryland on consumer genetics and in Iowa on newborn screening samples are models for policymakers in regulating law enforcement use of these genetic resources.

• Natalie Ram, JD (University of Maryland)
• R. Alta Charo, JD (University of Wisconsin-Madison)
• Moderated by Leslie Francis, PhD, JD (University of Utah)

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• Renske M.T. ten Ham, PhD, PharmD, MSc (The University Medical Center Utrecht)
• R. Brett McQueen, PhD (University of Colorado Anschutz Medical Campus)
• Moderated by Hadley S. Smith, PhD, MPSA (Harvard Medical School, Harvard Pilgrim Health Care Institute)

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• Elizabeth Gross Cohn, PhD, RN, FAAN (City University of New York, Columbia University)
• Gary Ashwal, MA (Booster Shot Media)
• Moderated by Sara Ackerman, PhD, MPH (University of California - San Francisco)

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• Francesca Forzano, MD, FRCP (Guy's & St. Thomas' NHS Foundation Trust, King's College London)
• Gabriel Lázaro-Muñoz, PhD, JD (Harvard Medical School)
• Moderated by Anna Lewis, DPhil (Harvard University, Brigham and Women's Hospital)

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• Phillip Wilcox, BForSci (Hons), PhD (University of Otago)
• Krystal Tsosie, PhD, MPH, MA (Arizona State University, Native BioData Consortium)
• Moderated by Josephine Johnston, LLB, MBHL (The Hastings Center, University of Otago)

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• Benjamin M. Neale, PhD (Massachusetts General Hospital, Harvard Medical School, Broad Institute)
• Evelynn Hammonds, PhD (Harvard University)
• Moderated by Michelle N. Meyer, PhD, JD (Geisinger College of Health Sciences) and Erik Parens, PhD (The Hastings Center)