About

Professor Jean Cadigan is involved in research addressing the ethical, policy, and governance issues related to human genome editing. Her work focuses on the responsible development and oversight of genome editing technologies, particularly in the context of preventive genome editing (PGE) research and incidental enhancement concerns. She examines how scientific goals, incentives, and social factors influence the interpretation and governance of incidental enhancement implications in genome editing research. Her research aims to inform empirical and ethical analysis to help policymakers, the research community, and the public anticipate and address the moral and policy challenges posed by genome editing applications, especially those that blur the lines between treatment, prevention, and enhancement.

Research topics

• Political Science
• Engineering ethics
• Social Science
• Computer Science
• Engineering
• Sociology
• Genetics
• Business
• Law
• Public relations
• Biology
• Management

Selected publications

• A New Governance Approach to Regulating Human Genome Editing.

  North Carolina journal of law & technology · 2025 · 6 citations

  Senior authorCorresponding
  • Political Science
  • Political Science
  • Public relations

  For years, genomic medicine-medicine based on the growing understanding of the genetic contribution to many diseases and conditions-has been hailed as the future of medical treatment, but it has thus far had limited effect on day-to-day medical practice. The ultimate goal of genomic medicine has always been the ability not just to identify dangerous gene mutations, but to fix them. Now CRISPR and related genome-editing technologies may have the potential to provide a safe and effective way to repair dangerous mutations. In the wake of ethically dubious experiments with human embryos in China, the international governance of human genome editing is emerging as an urgent topic for scientists, regulators, and the public. Efforts to develop a governance model are underway at national and international levels. These efforts are the subject of multiple initiatives by national and international health and science organizations and are topics of discussion at scientific conferences, summits, and meetings. This Article reports on the Authors' multi-year, interdisciplinary project to identify and investigate the practical, ethical, and policy considerations that are emerging as the greatest concerns about human genome editing, and ultimately to develop policy options. The project involves monitoring the discussions of groups, both government-sponsored and private, that are considering how genome editing should be governed; observing conferences where the topic is discussed; analyzing emerging policy reports by national and international bodies; and interviewing a wide range of stakeholders, including scientists, ethicists, and those who make and comment on public policy. The Article identifies several stakeholder concerns that are especially prominent in the research to date and begins to explore the implications of these concerns for alternative models of governance. There are current indications that, for practical purposes, a focus on "soft," hybrid forms of governance based on networks of multiple public and private stakeholders may turn out to be the most promising course to pursue. The "new governance" paradigm developed in the corporate and financial sectors offers a useful model for understanding the dynamics of this approach.

  PublisherOA PDF

• The Promise and Reality of Public Engagement in the Governance of Human Genome Editing Research

  The American Journal of Bioethics · 2023 · 38 citations

  • Political Science
  • Sociology
  • Public relations

  This paper analyses the activities of five organizations shaping the debate over the global governance of genome editing in order to assess current approaches to public engagement (PE). We compare the recommendations of each group with its own practices. All recommend broad engagement with the general public, but their practices vary from expert-driven models dominated by scientists, experts, and civil society groups to citizen deliberation-driven models that feature bidirectional consultation with local citizens, as well as hybrid models that combine elements of both approaches. Only one group practices PE that seeks community perspectives to advance equity. In most cases, PE does little more than record already well-known views held by the most vocal groups, and thus is unlikely to produce more just or equitable processes or policy outcomes. Our exploration of the strengths, weaknesses, and possibilities of current forms of PE suggests a need to rethink both "public" and "engagement."

  PublisherOA PDFDOI

• The Rise of Population Genomic Screening: Characteristics of Current Programs and the Need for Evidence Regarding Optimal Implementation

  Journal of Personalized Medicine · 2022 · 55 citations

  • Computer Science
  • Political Science
  • Medicine

  PURPOSE: Advances in clinical genomic sequencing capabilities, including reduced costs and knowledge gains, have bolstered the consideration of genomic screening in healthy adult populations. Yet, little is known about the existing landscape of genomic screening programs in the United States. It can be difficult to find information on current implementation efforts and best practices, particularly in light of critical questions about equity, cost, and benefit. METHODS: In 2020, we searched publicly available information on the Internet and the scientific literature to identify programs and collect information, including: setting, program funding, targeted population, test offered, and patient cost. Program representatives were contacted throughout 2020 and 2021 to clarify, update, and supplement the publicly available information. RESULTS: Twelve programs were identified. Information was available on key program features, such as setting, genes tested, and target populations. Data on costs, outcomes, or long-term sustainability plans were not always available. Most programs offered testing at no or significantly reduced cost due to generous pilot funding, although the sustainability of these programs remains unknown. Gene testing lists were diverse, ranging from 11 genes (CDC tier 1 genes) to 59 genes (ACMG secondary findings list v.2) to broad exome and genome sequencing. This diversity presents challenges for harmonized data collection and assessment of program outcomes. CONCLUSIONS: Early programs are exploring the logistics and utility of population genomic screening in various settings. Coordinated efforts are needed to take advantage of data collected about uptake, infrastructure, and intervention outcomes to inform future research, evaluation, and program development.

  DOI

• The View from the Benches: Scientists' Perspectives on the Uses and Governance of Human Gene-Editing Research

  The CRISPR Journal · 2021 · 10 citations

  • Political Science
  • Public relations
  • Political Science

  The advent of human gene editing has stimulated international interest in how best to govern this research. However, research on stakeholder views has neglected scientists themselves. We surveyed 212 scientists who use gene editing in their work. Questions captured views on oversight and use of somatic and germline human gene editing for treatment, prevention, and enhancement. More respondents were supportive of somatic than germline editing, and more supported gene editing for treatment compared to prevention. Few supported its use for enhancement. When presented with specific conditions, levels of support for somatic editing differed by type of condition. Almost all respondents said scientists and national government representatives should be involved in oversight, but only 28% said scientists are best positioned to oversee gene-editing research. These results can inform the development of sound approaches to research governance, demonstrating the importance of identifying specific gene-editing uses when considering oversight.

  PublisherOA PDFDOI

• Hospital Policies During COVID-19: An Analysis of Visitor Restrictions

  Journal of Public Health Management and Practice · 2021 · 95 citations

  • Computer Science
  • Business
  • Computer Science

  OBJECTIVE: In response to the COVID-19 pandemic, hospitals have developed visitor restriction policies in order to mitigate spread of infection. We reviewed hospital visitor restriction policies for consistency and to develop recommendations to highlight fair and transparent restrictions, exceptions, and appeals in policy development and implementation. DESIGN: Collection and analysis of public-facing visitor restriction policies during the first 3 months of the pandemic. SETTING: General acute care hospitals representing 23 states across all 4 major regions of the United States. PARTICIPANTS: A cohort of the 70 largest hospitals by total bed capacity. MEASUREMENTS: Characteristics of visitor restriction policies including general visitor restriction statement, changes/updates to policies over time, exceptions to policies, and restrictions specific to COVID-19-positive patients. RESULTS: Sixty-five of the 70 hospitals reviewed had public-facing visitor restriction policies. Forty-nine of these 65 policies had general "no-visitor" statements, whereas 16 allowed at least 1 visitor to accompany all patients. Sixty-three of 65 hospitals included exceptions to their visitor restriction policies. Setting-specific exceptions included pediatrics, obstetrics/gynecology, emergency department, behavioral health, inpatient rehabilitation, surgery, and outpatient clinics. Exceptions that applied across settings included patients at end of life and patients with disabilities. CONCLUSION: Visitor restriction policies varied significantly among hospitals in this review. These variances create challenges in that their fair application may be problematic and ethical issues related to allocation may arise. Five recommendations are offered for hospitals revising or creating such policies, including that offering transparent, accessible, public-facing policies can minimize ethical dilemmas. In addition, hospitals would benefit from communicating with each other in the development of visitor policies to ensure uniformity and support patients and family members as they navigate hospital visitation.

  PublisherDOI

• Is Real-Time ELSI Realistic?

  AJOB Empirical Bioethics · 2020 · 15 citations

  • Computer Science
  • Sociology
  • Engineering ethics

  We conclude that there are significant barriers to real-time ELSI influence. The difficulty does not reside in any intended exclusion of an ELSI perspective, but in factors endemic to genomic research, including knowledge disparities, epistemological biases, and the pressures of time and money.

  DOI

• Professionalism and Ethics: A Standardized Patient Observed Standardized Clinical Examination to Assess ACGME Pediatric Professionalism Milestones

  MedEdPORTAL · 2020 · 14 citations

  • Medicine
  • Psychology
  • Pediatrics

  Introduction: The ethical skills fundamental to medical practice encompass a large portion of the Accreditation Council for Graduate Medical Education (ACGME) professionalism milestones. Yet many ethical practices are difficult to reduce to milestone frameworks given the variety of traditions of moral reasoning that clinician-trainees and their colleagues might properly employ. Methods: We developed an observed standardized clinical examination (OSCE) simulation with standardized patients to assess the ethical skills captured in professionalism milestones in pediatrics. The OSCE included four vignettes based on actual cases that presented problems without a correct answer. Residents discussed ethically challenging issues with standardized patients and were evaluated on specific ethical tenets contained in the professionalism milestones. Our assessment guide for preceptors offered content for debriefing and assessment. We piloted this OSCE with seven preceptors and 17 pediatric residents in two different medical settings. Results: Residents all agreed that the four cases were realistic. All but two residents agreed that OSCEs like this one are an appropriate or objective way of assessing the ACGME professionalism milestones. All preceptors reported that they strongly agreed the assessment improved their ability to assess the professionalism milestones. Discussion: This OSCE offers a structured method to assess professionalism milestones and a forum to discuss ethical problem solving. It can also be used solely as a training exercise in ethical decision making and having difficult conversations.

  DOI

Frequent coauthors

• Arlene M. Davis

  University of North Carolina at Chapel Hill

  8 shared

• John M. Conley

  University of North Carolina at Chapel Hill

  4 shared

• Gail E. Henderson

  4 shared

• Daniel E Jonas

  University Medical Center Freiburg

  2 shared

• Margaret Waltz

  University of North Carolina at Chapel Hill

  2 shared

• K.L. Dover

  2 shared

• Eric T. Juengst

  University of North Carolina at Chapel Hill

  2 shared

• Rebecca L. Walker

  2 shared

Labs

• Incidental Enhancement: Addressing a Neglected Policy Issue in Human Genome EditingPI

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