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Center for Genomics and Society, 2019 – 2024

With support from the UNC School of Medicine Office of Research, the Center for Genomics and Society (CGS) provided an intellectual environment for a diverse community of research scientists dedicated to translational genomics research. Oversight was provided by six CGS faculty from Social Medicine, Nursing, Genetics, and the Center for Bioethics [Henderson, Cadigan, Juengst, Davis, Berg, Van Riper].

There are several research projects at UNC that include an ELSI component or are funded by NHGRI’s Ethical, Legal, and Social Implications (ELSI) program, and regularly engage with Center faculty (e.g., Jonathan Berg’s Program for Precision Medicine in Health Care). While several of these projects have overlapping faculty and staff, they are independent of each other and are housed in different departments. The CGS facilitated communication and collaboration across these teams via the CGS listserv (185 members) and website. The Center was a consultation resource for these current projects, as well as for teams planning to write grants that include an ELSI component.  We assisted with preparation of R01 grant applications, training grant applications, and supplement requests, including minority supplements. The Center also continued its role in mentoring future ELSI scholars by providing them with a community and access to faculty mentors. Members served on several dissertation and promotion committees.

Finally, Kriste Kuczynski and Gail Henderson maintained regular contact with the NHGRI ELSI Program and the network of other Centers of Excellence in ELSI Research (CEER), past and current, via monthly CEER meetings and participation in the Center for ELSI Resources and Analysis at Columbia University (CERA). CERA was funded to create a digital platform of ELSI resources (including a publications database) and foster a community of multi-disciplinary researchers focused on high priority ELSI issues, and to organize the national ELSI Congresses.

Following is a list of activities that the CGS has sponsored or been involved in since 2020. The activities are grouped by category. In 2021-2022, our activities were focused more on Grant Development, Grant Support, and Collaborations than on Education and Outreach.

 

EDUCATION AND OUTREACH

 

Lunch and Learn Series

During 2020, the Center for Genomics and Society and the Program for Precision Medicine in Healthcare (PPMH) partnered to host monthly Lunch and Learn sessions at which we view video lectures related to genomics research and then host in person discussion with faculty members.

  • “Making Precision Medicine Socially Precise” – Esteban González Burchard, Director of the UCSF Asthma Collaboratory

A video from the NHGRI Genomics and Health Disparities Lecture Series

Viewed on January 13, 2020.

  • “Genes, Lifestyle, And Risk for Heart Attack” – Sekar Kathiresan, Co-founder and CEO of Verve Therapeutics

A Video from the NIH Director’s Wednesday Afternoon Lecture Series

Viewed on February 10, 2020.

  • “The “All of us” research program: An Overview and Focus on Genetics Research & Consenting” – Joni Rutter, PhD, Director of Scientific Programs for the All of Us Research Program

A Video from the U.S. Department of Health and Human Services

Viewed on March 9, 2020.

  • “The Gene: An Intimate History” | April 24, 2020

A PBS series that presents a historical biography of the human genome. We watched segments together via Zoom and facilitated a discussion after.

  • “Unnatural Selection” | May 22, May 29, June 5, and June 12, 2020

A Netflix docuseries that presents an overview of genetic engineering and particularly, the DNA-editing technology of CRISPR, from the perspective of scientists, corporations and biohackers working from their home. We watched one episode per week via Zoom while conducting a simultaneous chat with participants. We also had a brief discussion after each episode.

 

CGS Seminars

Searching for A Cure:  Sickle Cell Disease Gene Editing – Vence Bonham | January 30, 2020

This event was co-sponsored by the Center for Health Equity Research (CHER).

The National Academies of Sciences 2017 Human Genome Editing Report identified seven principles that should undergird the oversight systems, research surrounding, and eventual clinical uses of human genome editing: (1) promoting well-being, (2) transparency, (3) due care, (4) responsible science, (5) respect for persons, (6) fairness, and (7) transnational cooperation.  Each principle is essential to implementation of somatic genome editing for Sickle Cell Disease. Vence Bonham will examine the principles of fairness and transnational cooperation in the race to develop new curative treatments for sickle cell disease.

 

Human Nature Panel Discussion: Editing Along Ethical Boundaries | October 21, 2020

This event was co-sponsored by the UNC Office of Research, RENCI, and the PPMH.  It was intended to be an in-person spring showing of the film with the panel discussion to follow.  COVID-19 required us to come up with an online alternative.

Human Nature tells the story of the biggest tech revolution of the 21st century. A breakthrough called CRISPR has given us unprecedented control over the basic building blocks of life. It opens the door to curing diseases, reshaping the biosphere, and designing our own children. Human Nature is a provocative exploration of CRISPR’s far-reaching implications, through the eyes of the scientists who discovered it, the families it’s affecting, and the bioengineers who are testing its limits.

Our panel discussion focused on how UNC researchers are leveraging this game-changing technology in their research, how data scientists are powering their breakthroughs, and the ethical implications all must consider.

Panelists:

Terry Magnuson, Vice Chancellor for Research

Stan Ahalt, Director of RENCI

Eric Juengst, Director of UNC Center for Bioethics

Kimberly Robasky, Adjunct Assistant Professor, Genetics & Head of Translational Science at RENCI

 

Beyond the Medical: Genetic Testing for Social Traits – Jean Cadigan & Anya Prince | January 20, 2023

In traditional predictive genetic testing, single gene variants are analyzed to determine whether individuals are at high risk of developing disease. The vast majority of diseases, however, are polygenic—caused by many different genes. Polygenic risk scores (PRS) hold promise to predict risk for complex diseases like heart disease or diabetes by measuring the contribution of hundreds of genetic variants at once. Yet beyond prediction of medical outcomes, the realm of ‘sociogenomics’ is developing polygenic scores (PGS) measuring genetic contributions to social traits and behavioral factors, such as income, educational attainment, sexuality, and optimism. This presentation will present initial findings of a newly-funded NIH grant to study these complex scores.

 

The Use of Race, Ethnicity, and Ancestry as Population Descriptors in Genomics Research: A Panel Discussion with Charmaine Royal | April 20, 2023

This event was co-sponsored by UNC Program for Precision Medicine in Health Care, Office of Diversity, Equity, and Inclusion, UNC – SOM, and Department of Genetics, UNC – SOM.

This session began with a review of NASEM Report Highlights by Charmaine Royal, followed by a panel discussion with UNC faculty members who discussed implications for their fields:

  • Genetic Epidemiology – Laura Raffield
  • Population Genetics – Daniel Matute
  • Genomic Translational Research – Jonathan Berg
  • Genetics & Genomics Publications – Greg Copenhaver

 

In Vitro Neural Platforms: Development and Integration into Health Care | October 2, 2023

This workshop was co-sponsored with the Program for Precision Medicine in Health Care and the Center for Bioethics and was convened by post-doctoral fellow, Aurora Washington.

As the use of in vitro neural platforms like brain organoids and microtissues increases, there is a lack of general knowledge about the limitations of the platforms. Bioethicists and scientists may also have concerns about the implications of the use of these systems in clinical and nonclinical research.

This workshop will facilitate a discussion of in vitro neural platforms development, organoid intelligence, and oversight of this technology. The plenary speaker was Dr. Katherine MacDuffie, Assistant Professor, Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington Medicine.

Platform presentations addressed:

  • Demystifying the Biology of Learning in In Vitro Neural Platforms
  • mAI vs. bAI: What is the relationship between Machine Artificial Intelligence and Biological Artificial Intelligence?
  • Defining Intelligence, Consciousness, and Sentience. How do we measure them?
  • Regulation of Neural Platforms: Current Practices and Predicting a Future Course

 

ELSI and the Virome: Bugs, Drugs, and Precision Viral Care – Karen Meagher | May 8, 2024

This event was co-hosted by the UNC Center for Bioethics.

Advancing understanding of the human virome (all viruses that live in and on us) is a national scientific priority. Commensal relationships with viruses prompt questions of what it means to be human and healthy, shifting with new understandings of our complex cohabitation with the most abundant replicating entity on the planet.  Applications of human viromics include the capacity to detect directionality of disease transmission, bacteriophage therapy development, and virulence factor studies. In this presentation, ethical, legal, and social implications (ELSI) of these viromics topics will be presented via vignettes which comprise textual scenarios designed to elicit attendee reflection.  We will discuss the ELSI implications of each, soliciting feedback on draft vignettes which will be used in future research.

 

GRANTSMANSHIP

Development Assistance

NHGRI/NIH R01HG010661 – “Incidental Enhancement: Addressing a Neglected Policy Issue in Human Genome Editing” (MPIs Eric Juengst and Jean Cadigan, funded Spring 2020) https://go.unc.edu/pge-policy

NC TraCS/ PPMH – “Expanding the Utility of Non-Invasive Prenatal Genetic Testing” (PI Vora, funded March 2020)

NHLBI/ NIAID CFAR Supplement Grant – “Road to HIV and Sickle Cell Disease Gene-based Cures in Sub-Saharan Africa: A Preparatory Pilot in Lilongwe, Malawi” (PI Westmoreland, funded October 2020)

NHGRI/NIH R25 – “UNC Educational Pathways to Increase Diversity in GEnomics (EDGE Genomics)” (MPIs Berg and Ideraabdullah, funded February 2021) https://www.med.unc.edu/ppmh/resources/resources-for-students/edge-genomics/

NHGRI/NIH U01HG006487 Novel and Exceptional Technology and Research Advisory Committee “North Carolina Clinical Genomic Evaluation by Next-gen Exome Sequencing 2” (PI Berg, funded June 2021) https://www.med.unc.edu/genetics/berglab/research/ncgenes2/

Multi-site grant submitted to NSF – “Engineering Research Center for Precision Microbiome Engineering (PreMiEr)” (UNC site PI Stewart, PI Ethics and Societal Impacts Core Cadigan, funded August 2022)

NHGRI/NIH R01HG012402 – “Beyond the Medical: The ELSI of Polygenic Scores for Social Traits” (MPIs Jean Cadigan and Anya Prince, funded Fall 2021) https://www.med.unc.edu/cgs/beyond-the-medical-the-elsi-of-polygenic-scores-for-social-traits/

NCI/NIH 1R21HG012672   – “Implementing and Evaluating Genetic Screening in Healthy Adults for Precision Public Health” (PI Roberts, funded July 2022)

NHGRI/NIH R01HG012271 – “Age-based genomic screening in newborns, infants, and children: A novel paradigm in public health genomics” (MPIs Berg and Milko, funded Fall 2022) https://www.med.unc.edu/genetics/abgs/

NIH Common Fund U54 Human Virome Characterization Centers – (PI Dittmer, ELSI Core PI Henderson, submitted December 2023)

Greenwall Faculty Scholars program – “Prenatal Diagnosis in the Post Roe Era” (PI Talati, submitted September 2023)

UNC TraCS/ K-12 “Identifying facilitators and barriers to reproductive genetic testing among Black communities” (PI Talati, submitted February 2024)

NCI/NIH R21 – “ELSI of the Human Virome” (PI Henderson, submitted February 2024)

 

Projects Supported by CGS Faculty and Staff

NHGRI/NIH R01HG008988-01A1- “Addressing Ethical Challenges in Networked Biorepositories” (MPIs Brothers and Goldenberg, 2016 – 2021)

UNC CTSA Supplement 3UL1TR002489-02S1- “Anticipating a Neglected Issue in Genome Editing Governance” (MPIs Buse and Carey, 2019 – 2021)

NHGRI/NIH R01HG010661- “Incidental Enhancement: Addressing a Neglected Policy Issue in Human Genome Editing” (MPIs Juengst and Cadigan, 2020 -2025)

NHGRI/NIH U01HG006487 Novel and Exceptional Technology and Research Advisory Committee- “North Carolina Clinical Genomic Evaluation by Next-gen Exome Sequencing 2” (PI Berg, 2021 – 2022)

NHGRI/NIH – R01HG011598- “Utility of Genome Sequencing in Community Care Contexts” (MPIs Brothers and Cooper, 2021 – 2025)

NHGRI/NIH R25- “UNC Educational Pathways to Increase Diversity in GEnomics (EDGE Genomics)” (MPIs Berg and Ideraabdullah, 2022 – 2027)

NHGRI/NIH R01HG012402- “Beyond the Medical: The ELSI of Polygenic Scores for Social Traits” (MPIs Cadigan and Prince, 2022 – 2026)

NHGRI/NIH R01HG012271- “Age-based genomic screening in newborns, infants, and children: A novel paradigm in public health genomics” (MPIs Berg and Milko, 2022 – 2026)

NCI/NIH 1R21HG012672  – “Implementing and Evaluating Genetic Screening in Healthy Adults for Precision Public Health” (PI Roberts, 2022-2024)

Program for Precision Medicine in Health Care – Precision Genomic Screening Working Group
The work of this group builds on the CGS GeneScreen pilot research project (see https://www.med.unc.edu/cgs/ceer/genescreen/).

 

Selected Publications by CGS Faculty and Staff

CGS faculty and staff have published more than 100 ELSI-related articles since 2020, in genetics, ethics, social science and law, including such journals as Nature Genetics, Genetics and Medicine, Clinical Translational Science, AMA Ethics and Journal of Law, Medicine, and Ethics.  Selected titles include:

  • Kraft, S. A., Russell, H., Bensen, J. T., Bonini, K. E., Robinson, J. O., Sahin‐Hodoglugil, N., … & Knight, S. J. (2023). Conducting clinical genomics research during the COVID‐19 pandemic: Lessons learned from the CSER consortium experience. American Journal of Medical Genetics Part A, 191(2), 391-399.
  • Canter, C., Foley, K., Callier, S. L., Meagher, K. M., Waltz, M., Washington, A., … & Beyond the Medical R01 Research Team. (2023). The Slippery Slope of Prenatal Testing for Social Traits. The American Journal of Bioethics, 23(3), 36-38.
  • Conley, J. M., Cadigan, R. J., Davis, A. M., Juengst, E. T., Kuczynski, K., Major, R., … & Henderson, G. E. (2023). The promise and reality of public engagement in the governance of human genome editing research. The American Journal of Bioethics, 23(7), 9-16.
  • DiStefano, M. T., Goehringer, S., Babb, L., Alkuraya, F. S., Amberger, J., Amin, M., … & Rehm, H. L. (2022). The gene curation coalition: a global effort to harmonize gene–disease evidence resources. Genetics in Medicine, 24(8), 1732-1742.
  • Foss, K. S., O’Daniel, J. M., Berg, J. S., Powell, S. N., Cadigan, R. J., Kuczynski, K. J., … & Henderson, G. E. (2022). The rise of population genomic screening: characteristics of current programs and the need for evidence regarding optimal implementation. Journal of personalized medicine, 12(5), 692.

 

PARTICIPATION IN NIH ELSI PROGRAM ACTIVITIES

Centers of Excellence in the ELSI of Genomics (CEER) Monthly Meetings (Henderson and Kuczynski)

ELSI Friday Forums, monthly one-hour seminar series featuring topics on the ethical, legal, and social implications (ELSI) of genetics and genomics research (Henderson and Kuczynski)

ELSI Congress Planning Committees, 2020, 2022 & 2024, hosted by the ELSI Program of NHGRI (Henderson)

Planning Committee for the CEER Final Meeting, 2024, hosted by the ELSI Program of NHGRI (Henderson)

Center for ELSI Research Resources, External Scientific Oversight Panel (Juengst)

CEER Final Meeting, May 2-3, 2024, in Nashville, TN (Henderson, Cadigan, and Kuczynski)

 

OTHER COLLABORATIONS

Explorations in Genomic Medicine Research | May – June 2021

This introductory course was a pilot educational program for under-represented minority undergrads who are interested in genomics medicine and research, with optional professional development events. It was funded by the PPMH.

Joint Postdoctoral Fellowship in Clinical Ethics and the ELSI of Precision Medicine

In 2022, the University of North Carolina (UNC) Center for Genomics and Society (CGS) and the Center for Bioethics (C:B), together with the Program for Precision Medicine in Health Care (PPMH), announced a joint postdoctoral position in clinical ethics and the ethical, legal, and social implications (ELSI) of precision medicine. Through this partnership, we have expanded the original CGS postdoctoral training program to include an emphasis on practical clinical ethics and attention to precision medicine.

Carolina Seminars

The Carolina Seminars Program was created in 1991 and is supported by the Massey-Weatherspoon Fund. The Seminars serve the “of the public, for the public” service mission of the University to the people of North Carolina and beyond through an expanding collaborative effort on timely topics of interest to policy and scholarly exchange.

The Center for Genomics and Society, along with the Program for Precision Medicine and Health Care and the UNC Center for Bioethics applied for and was granted funding to sponsor a series of seminars. The series is titled, “Science meets society at the intersection between precision medicine and justice, equity, and inclusion.”

This interdisciplinary and interprofessional seminar examines the fields of genomic medicine and precision health through the lens of justice. The ethical, legal, and social implications of both fields have received widespread attention in recent years, but one perspective on these implications has been under-developed to date: the challenges that these new fields face in attempting to meet the demands of equity and fair representation in their research and clinical endeavors. In each seminar the goal is to encourage interdisciplinary dialog, identify societal challenges and/or potential disparities raised by technological innovation, and develop actionable strategies for further research and implementation.

“Empowering Trust: Insights from Community Engagement Initiatives”

Community engagement continues to be a critical component in genomic medicine and precision health research where the overall goal is to improve health outcomes of communities.  The translation of findings into practice and implementation depends heavily on stakeholder engagement throughout the research process. In this seminar session, we will explore insights gained from various engagement strategies and how appropriate incorporation of community stakeholders’ insights can improve the relevance and usefulness of genomic medicine and precision health research.  Speakers and panelists will share their perspectives on community engagement, discuss strategies to address the gaps that remain and how to address the challenge of hesitancy among some communities.

“Precision Medicine Research and Novel Clinical Offerings: Ensuring Equitable Impact Through Implementation Science”

As technologies and health interventions expand at a rapid rate in healthcare, many providers and patients desire quick and efficient incorporation of these new offerings in to practice.  The field of implementation science can be critical in studying the barriers and facilitators to bring options previously available only in the research realm to the clinic. The design and development of health interventions are increasingly informed by implementation science theories, models, and frameworks to emphasize diverse reach and improve adoption and increase health equity in underserved and marginalized communities. By testing new clinical offerings with implementation science methodologies, we can improve the quality of health practices for all patients while promoting equity and inclusion and ensuring that the availability of novel clinical offerings does not exacerbate existing health disparities.

“Ensuring Fairness:  At the Crossroads of Equity and Economic Considerations in Precision Medicine”

Efforts to expand access to genomic health and precision medicine have resulted in a proliferation of screening programs for healthy adult populations across the nation. Issues of fairness and equity abound in medicine and are a critical component of assessing implementation of these genomic health and precision medicine efforts. But how can programs such as genomic screening ensure equitable access within a healthcare system that is already characterized by massive health disparities and barriers to equitable access? When and how should cost-effectiveness be considered when designing screening programs and their offerings? How can cost-effectiveness models incorporate justice, equity and inclusion? In this seminar session, we will explore these questions and the overall relationship between equity and economic considerations in precision medicine.

“Confronting Bias in Medical Algorithms at UNC Health”

This seminar features three UNC faculty who will offer their perspectives on bias in medical algorithms. Dr. Gibson, a nephrologist, will discuss race corrections for estimated glomerular filtration rate (eGFR). Dr. Goralski, Pulmonary/Critical Care, will discuss bias in pulse oximeter and pulmonology function tests. Dr. Seashore, Associate Chief Medical Informatics Officer for UNC Health, will discuss how UNC Health is approaching AI for clinical use, particularly when bias is “baked-in” to Epic@UNC.

“Unlocking Equity: Disability Inclusion in Precision Medicine Research”

Despite comprising about 27% of the US population, the disability community has remained largely absent from diversity, equity and inclusion (DEI) efforts in precision medicine and genomics research. Research suggests that individuals with disabilities are willing to participate in precision medicine research, yet this group continues to be underrepresented. Reasons for this absence range from inaccessible research protocols (i.e. overly narrow inclusion and exclusion criteria) to the perception that it is too burdensome to recruit or accommodate disabled participants. Research can also be subject to ableism, which discourages marginalized communities from potential research partnerships. If not designed and communicated in ways that respect the complexity and diversity of human genetic variation, identities, and experiences, research risks reifying prejudices that marginalize those it hopes to benefit. This seminar will explore insights into various aspects of disability inclusion within precision medicine and genomics research with a lens on equity, accessibility, participation, and justice.

“Working towards justice and genetic health literacy in clinical genomics”

Marginalized racial and ethnic communities have been the focus of increased attention by precision medicine researchers seeking to foster justice and promote health equity in clinical genomics.  Low education level and socioeconomic status are factors that contribute to the lack access to basic health care in these marginalized groups.  Targeted efforts to increase genetic health literacy as a first approach to support informed decision making is complex.  Speaker(s) and panelists will share their perspectives on strategies to address this complex issue effectively and appropriately.