This editorial can be found in the November 2025 issue of the American Journal of Bioethics
The ELSI Research Program at the National Human Genome Research Institute sponsors a biennial ELSI Congress for the multi-disciplinary field of study that anticipates and addresses the ethical, legal, and social implications (ELSI) of genetics and genomics. The convening has enabled researchers, scholars, practitioners, trainees, policymakers, journalists, and the public to explore the latest ELSI research in a mix of plenary sessions and peer-reviewed panel and poster presentations. Five prior congresses, and a virtual forum held during the COVID-19 pandemic, reflected on the field’s past, present, and future and examined its influence on genetics research and public policy.
The 6th ELSI Congress, ELSIcon2024: Reimagining the Benefits of Genomic Sciences, was a hybrid meeting hosted June 10–12, 2024, in New York City by Columbia and Stanford Universities. A multidisciplinary ELSI Congress Organizing CommitteeFootnote1 focused the meeting on how social, cultural, political, and economic developments around the world, along with the rapid technological transformation of genomic science, have raised considerations for the ethical conduct and equitably beneficial implementation of genomic discoveries. ELSIcon2024 focused on innovative, integrative research and scholarship on the potential benefits of genomics research while engaging a wide range of ELSI topics from across the expanding genomic landscape. It featured 212 presenters in 3 plenary sessions, 21 panels, 61 paper presentations, and 100 posters, and was attended by over 300 people from 19 countries.
After the congress, the Center for ELSI Resources and Analysis (CERA), an organization at the center of the field of study that aims to enhance the production and use of ELSI research and build the community of ELSI researchers, collaborated with the American Journal of Bioethics to call for papers amongst congress presenters of normative or conceptual work. UnconflictedFootnote2 members of the organizing committee and the journal selected the final set of papers for the issue. Selections were made, in part, because they exemplified the congress theme. To complete the issue, AJOB coordinated an open call for peer commentaries that responded to each of the selected articles, which resulted in an additional 22 papers. Together, the set of papers in this issue and their associated commentaries explore novel ways to increase and equitably distribute the public health benefits of genomic science.
Spector-Bagdady’s contribution examines relationships between the private sector and academia in the genomic data market. She argues that these collaborations benefit both parties, but not necessarily the public. She tracks changes to the federal funding of academic research initiated by the Trump Administration and suggests they might further incentivize academic-industry partnerships. Using the market for genomic data—a place where academia and industry have collaborated for more than a decade—as an example, Spector-Bagdady finds that the structure of academic medicine, including time constraints, promotion and tenure expectations, and barriers related to individual and systemic racism, limits efforts to increase the diversity of genomic databases, which is a necessary precondition to the equitable distribution of the benefits of genomic medicine. Academia’s expertise, Spector-Bagdady argues, provides bargaining power in its negotiations with industry, but individual researchers are limited in their ability to leverage it. Instead, the expertise that academia offers should be leveraged collectively and withheld from industry unless it complies with institutional policies that ensure relations between these sectors advance public health goals, including health equity (Spector-Bagdady Citation2025).
In their contribution, MacDuffie and colleagues explore two possible functions of genomic diagnosis in the developmental services system for children with congenital conditions and developmental disabilities and their potential impact on disparities in access to services. The authors caution against a system that would “qualify” or prioritize access to services for children with a genetic diagnosis over those who either were unable to access genetic testing or did not receive a definitive diagnosis, as this system would advantage families that already have more resources. They conclude that fewer inequities would exist if a diagnosis functioned as a “genomics-enabled roadmap,” or guide that can shape a care plan in a “labyrinthine and often uncoordinated” referral, assessment, and service provision landscape (MacDuffie et al. Citation2025). Their analysis highlights the practical benefits that families with a genetic diagnosis may receive as they use it to guide care, services, and social supports that can improve function and quality of life for their children when working with developmental services professionals. This benefit of a genomic diagnosis, the authors contend, is structurally enabled and constrained by organizations, laws, funding, and the actions and knowledge of service providers and families. They call for expanded funding for early childhood services, investments in navigation programs and advocacy skills for families, and development of an evidence base designed to connect genomic diagnoses to treatment recommendations (MacDuffie et al. Citation2025).
Holmes and colleagues also advocate for structural changes to safeguard reproductive autonomy in the context of expanded prenatal genomic testing. They argue that the typical practices that support reproductive autonomy during prenatal care, such as information provision, non-directive counseling, and informed consent, insufficiently account for the social norms and structural constraints that shape an individual’s ability to act autonomously in response to test offers. The reliance on a liberal model of autonomy in healthcare settings, as opposed to a relational model, creates the assumption that information gained via medical tests and delivered by medical professionals is of higher value than the direct experience of pregnant agents, even when the benefits or accuracy of the test has been over-emphasized in marketing materials and the knowledge and results cannot be translated into an action. Holmes and colleagues find that information compromises reproductive autonomy by undermining the epistemic authority of pregnant agents and remind us that autonomy can be exercised by not accepting a prenatal genomic test, even though “a decision not to undergo a “routine” test may look like a decision against autonomy” and be in defiance of social pressures and norms. The paper argues that reproductive autonomy requires that institutional conditions expand what appears possible to the pregnant agent, including the option to stop testing and meaningfully consider what it is like to have a child with a genetic condition (Holmes et al. Citation2025).
The three target articles in the issue highlight how social structures and norms shape access genomic medicine’s potential benefits, and they recommend bold institutional and governmental reforms. They reflect the ELSI field’s growing focus on the contexts in which genomic science is deployed, and the preexisting conditions it encounters. Across these papers, we see both hope in traditional, governmental investment in improve conditions that ensure collective and public health benefit, and recognition of new, powerful actors in academia and the private sector, each with their own leverage. Reimagining the benefits of genomic science toward a more ethical future will require mobilizing these actors, rethinking governance structures, and centering equity as a core goal.
ACKNOWLEDGEMENTS
We would like to express our gratitude for the financial support of the National Human Genome Research Institute and the work of the reviewers of the target articles in this issue and open peer commentary contributors.
DISCLOSURE STATEMENT
All authors received salary support from the National Human Genome Research Institute. The content is solely the responsibility of the authors.
Additional information
Funding
This special issue was funded by the National Human Genome Research Institute via its support to the biennial ELSI Congress (Grant number U13HG010830) and the Center for ELSI Resources and Analysis (Grant number U24HG010733).