Expanding Agenda Genomics – Report Identifies Actions to Advance Health Equity

Introduction

Genomics is being integrated into biomedical research, medicine and public health at a rapid pace, but the capabilities needed to ensure fair and global distribution of benefits are lagging behind. A new special report outlines opportunities to improve 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 article

The report, «Imagining fairer genomics» is a collaboration between the Hastings Center, a bioethics research institute, and the ELSI Center for Analysis and Resources (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 huge public investment places moral responsibilities across the entire genomics enterprise to develop the science and deliver its benefits fairly. and trustworthy,» 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 genomic workforce, addressing gaps in the genomic evidence base caused by sampling bias, ensuring access to genomic research, and maximizing the ability of genomics to promote health equity at both levels. the bench and the headboard.

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

Racism and inequality

• Researchers studying human genetics could «deconstruct genetics» (make it less exploitable by white nationalists and far-right political movements) by reforming research practices that make race appear genetic and fuel eugenic and racist thinking.
• They could also better measure the environments, contexts, and complexities of ethnic-racial identification to avoid 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.
• Greater involvement of community members in translational genomics 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 investigated) and to medical interventions. of precision that can benefit them.
• Funding agencies could require that researchers engage communities and provide sustained funding for the maintenance of these partnerships.
• Community members who participate in research may 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 people with neurodevelopmental differences or who experience psychiatric symptoms and commit to fighting prejudice against them.

Data

• Researchers could clearly explain and justify the choice of databases or data sets and provide justification for data exclusion decisions as part of the funding application, ethical review, data access and publication processes.
• Data repositories could implement ethics training as a requirement for accessing data for research uses beyond those for which the data were collected.
• For de-identified genomic data sets, institutions and funders could impose data security measures, allow researchers and community members to redact or delete data, and provide guidance on when data adjustments are necessary to protect individuals and the communities. They could also ensure that privacy and data protection practices are responsive to the sociopolitical environment and can act quickly to protect marginalized populations in response to emerging threats to data security.
• 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 resourceful institutions in multinational research projects.

Expanding the agenda

• Researchers could investigate and resist nationalist ideologies and practices in the development of biotechnologies and the 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 and build capacity in communities, especially those most likely to be affected by climate change, while planning genomics-based conservation interventions.
• To address the collective harms and benefits of genomics research for indigenous peoples, the United Nations Declaration on the Rights of Indigenous Peoples could guide national governance of genomics research.

Report editors

Josephine Johnston, senior researcher at the Hastings Center and associate professor at the University of Otago; Deanne Dunbar Dolan, researcher at the Stanford Center for Biomedical Ethics in Stanford Medicine and co-investigator at the ELSI Resource and Analysis Center; Danielle M. Pacia, research associate at the Hastings Center; Sandra Soo-Jin Lee, professor of ethics and medical humanities and head 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.

Attribution/Source(s):
This peer-reviewed publication was selected for publication by the editors of Disabled World (DW) due to its important relevance to the disability community. Originally written by The Hastings Centerand published on 01/02/2025, content may have been edited for style, clarity, or brevity. For more details or clarifications, The Hastings Center He can be contacted at thehastingscenter.org. NOTE: Disabled World does not provide any warranty or endorsement related to this item.

Information and page references

Disabled World (DW) is a comprehensive online resource providing information and news related to disabilities, assistive technologies, and accessibility issues. Founded in 2004, our website covers a wide range of topics, including disability rights, healthcare, education, employment and independent living, with the goal of supporting the disability community and their families.

Cite this page (APA): The Hastings Center. (2025, January 2). Expanding the genomic agenda: report identifies actions to promote health equity. Disabled World (DW). Retrieved January 3, 2025 from www.disabled-world.com/assistivedevices/ai/imageomics/genomics.php

Permanent link: Expanding the genomics agenda: The report identifies actions to advance health equity: The report outlines strategies to improve justice in genomics, addressing challenges in workforce diversity, research practices, data management and community participation to ensure equitable distribution of the benefits of genomic medicine.

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