Ethical Genomics: Ensuring Equity and Fair Access for the Public

Genomics is the study of an organism’s genome or the complete set of DNA. it is transforming the biomedical research, medicine, and public health. However, the fair distribution of its benefits across the globe is slow (1^✔ ✔Trusted Source
Expanding the Agenda for a More Just Genomics

Go to source). “Envisioning a More Just Genomics” is a collaborative approach between The Hastings Center, a bioethics research institute, and the ‘Center for ELSI Resources and Analysis (CERA) which aims at ethical, legal, and social implications of genetics and genomics.

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Cell-Free DNA in Disease Detection

Cell-free DNA (cfDNA) is a DNA fragment released from a necrotic or apoptotic cell into the bloodstream. Using advanced technologies like liquid biopsy these cfDNAs are identified and potentially used as a biomarker in early detection of chronic diseases.

However, to ensure cfDNA benefits everyone equally, it is important to enhance genomic medicine as it promotes health equity, protects privacy, and respects the rights and values of individuals and communities.

Genomic studies are publicly funded and rely on samples and data from the public. Due to the large involvement of the public, ensuring moral responsibilities is significant in delivering genomic benefits in a fair and trustworthy way.

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Fighting Racism in Genetic Research

Researchers in human genetics can take several steps to overcome racism and prevent genetics from being misused. Some of the white nationalists or far-right political movements try to manipulate genetic findings to promote racism.

Research can be conducted without creating the impression that race is determined by genetics. This can break false beliefs like eugenics and whites being superior to blacks. Environment and cultural factors also influence people’s health and traits. It could prevent misinterpretation of research findings of race as genetics.

Using race as an easy attribute to study the effect of social and environmental issues like poverty or discrimination has to be avoided. This creates a false opinion that race is the sole response however it is the result of inequality. Participation of community members in translational genomic research can help focus on health issues in the community.

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Disability Rights in Genomics: Equal Access for All

People with disabilities should also have equal access to the research process to promote disability rights and justice in genomics. This involves deciding the research and access to medical treatment that could help them.

Funding organizations should require researchers to work with communities and ensure they get ongoing financial support to have a strong partnership. People involved in research should be fairly paid and empowered with knowledge, skills, and leadership roles. They should also be supported with training programs.

Researchers should involve people with neurodevelopmental problems like autism and break the stereotypes. They should be treated fairly with respect and rights.

Data Use and Privacy in Genomic Research

Researchers should explain why they chose certain data sets for the study and provide reasons if they exclude any data. It should be part of the funding process and reviews of ethics, data access, and publications.

Researchers should take ethical training as a requirement before they can access data to use it in other attributes. For genomic data that doesn’t identify individuals, institutions and funders should enforce strong security measures. Researchers and community members should be able to remove or hide sensitive data if needed to protect people.

Guidelines should be provided on when to make data changes to ensure privacy. New ways of sharing data could make clinical and genetic data more accessible, particularly for researchers in Africa, to help prevent exploitation by multinational research projects.

Sustainable Conservation and Indigenous Rights

Researchers could avoid nationalist ideologies or practices that could negatively impact the development and use of biotechnology.

Genomic and machine learning tools can be used to study the long-term effects of different environmental conservation strategies to ensure that priorities in conservation genomics are not determined by short-term interests.

Conservationists should consult with local communities affected by climate change before planning genomic related conservational strategies. Researchers should follow the guidelines of the U.N. Declaration on the Rights of Indigenous Peoples to ensure that their rights are respected and protected. Following the law and ethics can make people equally benefit from genomics.

Reference:

1. Expanding the Agenda for a More Just Genomics - (https://pubmed.ncbi.nlm.nih.gov/39707954/)

Source-Medindia