Genomics Equity: Strategies for Inclusive Research & Ethical Data

Author: The Hastings Center
Published: 2025/01/02 - Updated: 2025/04/22
Publication Details: Peer-Reviewed, Research, Study, Analysis
Category Topic: Imageomics - Academic Publications

Page Content: Synopsis - Introduction - Main - Insights, Updates

Synopsis: This article highlights the critical need for ethical considerations in genomic research and medicine. It outlines a comprehensive approach to addressing justice-related challenges in genomics, including workforce diversity, sampling bias, research access, and health equity. The report's focus on racism, fair inclusion, data management, and expanding the research agenda provides a roadmap for ensuring that genomic advancements benefit all communities equitably. By emphasizing the moral responsibilities associated with publicly funded genomics research, the article underscores the importance of developing and delivering genomic science in ways that are fair, trustworthy, and respectful of individual and community rights - Disabled World (DW).

Defining Genomics

Genomics: Genomics is is defined as the comprehensive study of an organism's entire genetic material, or genome, encompassing the structure, function, evolution, and mapping of all genes and genetic elements within it. This discipline involves sequencing DNA to determine the precise order of nucleotides, mapping genes to understand their locations and interactions on chromosomes, and employing functional genomics to decipher how genes operate and interact. Genomics extends beyond just the genes to include non-coding DNA sequences, regulatory elements, and epigenetic modifications, providing insights into how genetic information is managed and expressed. It integrates with various subfields like proteomics, metabolomics, and bioinformatics to explore the complexities of life at the molecular level, influencing areas such as personalized medicine, disease research, evolutionary biology, and agricultural biotechnology by offering a systemic view of genetic influence on traits, diseases, and evolutionary processes.

Introduction

Genomics is being integrated into biomedical research, medicine, and public health at a rapid pace, but the capacities necessary to ensure the fair, global distribution of benefits are lagging. A new special report outlines opportunities to enhance justice in genomics, toward a world in which genomic medicine promotes health equity, protects privacy, and respects the rights and values of individuals and communities.

Main Content

The report, "Envisioninga More Just Genomics," is a collaboration between The Hastings Center, a bioethics research institute, and the Center for ELSI Resources and Analysis (CERA), which focuses on the ethical, legal, and social implications of genetics and genomics. It was funded by the National Human Genome Research Institute.

"Much of genomics is publicly funded science that relies on samples and data from members of the public. This enormous public investment generates moral responsibilities across the genomics enterprise to develop the science and deliver its benefits in fair and trustworthy ways," says Josephine Johnston, one of the report's editors.

Examples of justice-related challenges explored in the special report include increasing the diversity of the genomics workforce, addressing deficiencies in the genomics evidence base caused by sampling bias, ensuring access to genomics research, and maximizing the ability for genomics to advance health equity at both the bench and the bedside.

The report is divided into four broad themes with key messages.

Racism and Inequity

Researchers who study human genetics could "de-weaponize genetics" (make it less exploitable by white nationalists and far-right political movements) by reforming research practices that make race appear to be genetic and feed eugenic and racist thinking.
They also could better measure environments, contexts, and the complexities of ethno-racial identification to prevent false racialization by consumers of scientific information.
Researchers could stop using race as a proxy for social and environmental exposures related to structural racism and discrimination and instead measure these exposures with validated tools and methods.
More participation by community members in translational genomic research could provide valuable local expertise and refocus attention on community determined health priorities.

Fair Inclusion in Research

To promote disability rights and justice in genomics, researchers could ensure that people with disabilities have equal access to the research process (for example, by participating in research and identifying what needs to be researched) and to precision medicine interventions that may benefit them.
Funding agencies could mandate that researchers engage communities and provide sustained funding for the maintenance of these partnerships.
Community members engaged in research could be fairly compensated; empowered with knowledge, skills, and leadership roles; and supported with investments in training programs.
Researchers could take responsibility for opposing misconceptions about individuals with neurodevelopmental differences or experiencing psychiatric symptoms and commit to fighting prejudice against them.

Data

Researchers could clearly explain and justify choice of databases or datasets and provide a rationale for data exclusion decisions as part of the funding application, ethics review, data access, and publication processes.
Data repositories could implement ethics training as a requirement for data access for research uses beyond that for which the data was collected.
For deidentified genomic datasets, institutions and funders could enforce data security measures, allow researchers and community members to redact or suppress data, and provide guidance on when data adjustments are necessary to protect individuals and communities. They could also ensure that privacy and data protection practices are responsive to the sociopolitical environment and are able to move quickly to protect marginalized populations in response to emerging data security threats.
New approaches to data sharing could democratize access to clinical and genetic data to advance health research in Africa and address African researchers' concerns about exploitation by more resourced institutions in multinational research projects.

Expanding the Agenda

Researchers could investigate and resist nationalist ideologies and practices in the development of biotechnologies and application of bioscientific knowledge.
To ensure that priorities in conservation genomics are not determined by short-term interests, genomic and machine learning models could be used to study the long-term impacts of various environmental conservation strategies.
Conservationists could consult with and build capacity in communities, especially those that are most likely to be affected by climate change, as they plan genomics-informed conservation interventions.
To address the collective harms and benefits of genomics research for Indigenous peoples, the U.N. Declaration on the Rights of Indigenous Peoples could guide national genomics research governance.

Editors of the Report

Josephine Johnston, a senior research scholar at The Hastings Center and an associate professor of the University of Otago; Deanne Dunbar Dolan, a research scholar at the Stanford Center for Biomedical Ethics at Stanford Medicine and a coinvestigator at the Center for ELSI Resources and Analysis; Danielle M. Pacia, a research associate at The Hastings Center; Sandra Soo-Jin Lee, professor of medical humanities and ethics and the chief of the Division of Ethics at Columbia University; and Mildred K. Cho, professor of pediatrics and medicine at Stanford University and associate director of the Stanford Center for Biomedical Ethics.

Insights, Analysis, and Developments

Editorial Note: As genomics rapidly transforms healthcare, this report reminds us that scientific progress without a commitment to justice risks deepening inequities rather than solving them. By calling for reforms that include better protections for vulnerable populations, more representative research, and ethically sound data practices, it sets a necessary benchmark for the future of genomics. Ensuring that these innovations uplift rather than marginalize will be essential as society navigates the promises and perils of genomic medicine. The urgency of this work lies in its refusal to treat genomics as a neutral science. By confronting systemic biases head-on - from dismantling race-based research shortcuts to safeguarding data for vulnerable populations - the report charts a path where cutting-edge science doesn't just avoid harm but actively repairs it. For communities often sidelined, especially disabled and Indigenous groups, these aren't abstract guidelines but blueprints for reclaiming agency in a field that shapes their futures - Disabled World (DW).

Attribution/Source(s): This peer reviewed publication was selected for publishing by the editors of Disabled World (DW) due to its relevance to the disability community. Originally authored by The Hastings Center and published on 2025/01/02, this content may have been edited for style, clarity, or brevity.