Expanding the agenda for more just genomics

The report, "Envisioning a 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.

The Special Report: https://onlinelibrary.wiley.com/toc/1552146x/2024/54/S2