Carolina Seminar Series 2023-2024
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 examined 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 was to encourage interdisciplinary dialog, identify societal challenges and/or potential disparities raised by technological innovation, and develop actionable strategies for further research and implementation.
Below is a list of the six seminars. To view the recording from an event, please click the title.
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 featured three UNC faculty who offered their perspectives on bias in medical algorithms. Dr. Gibson, a nephrologist, discussed race corrections for estimated glomerular filtration rate (eGFR). Dr. Goralski, Pulmonary/Critical Care, discussed bias in pulse oximeter and pulmonology function tests. Dr. Seashore, Associate Chief Medical Informatics Officer for UNC Health, discussed 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 shared their perspectives on strategies to address this complex issue effectively and appropriately.