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Indigenous genome ethics: Making genomic research inclusive and equitable

Gaps remain in genetic databases, clinical studies, and research due to the under- or misrepresentation of Indigenous peoples.

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Quantumrun Foresight
November 4, 2022

Insight summary

Despite the good intentions of many scientists, studies involving the DNA of Indigenous populations often result in a feeling of exploitation by Indigenous community members. There is a general lack of trust between Indigenous peoples and scientists because most studies conducted did not consider the needs or interests of those who contributed their DNA. For medical research to truly be effective and informative, there needs to be a better policy to ensure that DNA gathering is ethical and inclusive.

Indigenous genome ethics context

The Native American tribe Havasupai experienced rampant diabetes at the end of the 20th century. The tribe allowed Arizona State University researchers (ASU) to carry out a study in 1990 and take blood samples, hoping that research would assist them in reducing diabetes. But unknown to the Havasupai peoples, researchers had expanded the project’s parameters to include genetic indicators for alcoholism and other mental illnesses.

The researchers published numerous papers in academic journals, which led to news stories about inbreeding and schizophrenia among tribe members. The Havasupai filed a lawsuit against ASU in 2004. After the suit was settled in 2010, ASU returned the blood samples to the tribe and promised not to conduct or publish any more research.

Similarly, the Navajo Nation, the second-largest group of Indigenous peoples in the US, subsequently banned all genetic sequencing, analysis, and related research on its members due to previous exploitation. These examples are merely a few examples of unethical genomic research conducted on Indigenous peoples. Because of increasing mistrust toward genetic analysis, genetic samples from local tribes are usually not included in national genetic databases.

Disruptive impact

Biomedical research that affects Indigenous peoples must consider the histories of research exploitation and harm done by medical institutions and researchers. A crucial aspect of reframing recognizes the colonial and unfair relationship between Indigenous peoples and non-Indigenous research institutions. Too often, research about local groups without their input or involvement has been done.

And the policies that fund indigenous health research are not foolproof. These guidelines do not guarantee that the money reaches indigenous communities directly; more often, there are no procedures to prevent researchers from exploiting these communities.

Some universities and research groups are trying to change this relationship. In 2011, University of Illinois anthropologist Ripan Malhi launched the Summer Internship for Indigenous People in Genomics (SING) program. Every year, 15 to 20 Indigenous scientists and members of their communities gather for a week of hands-on genomics training. As a result, they gain skills to bring genetic research tools back to their communities.

In 2021, a consortium led by Australian National University Professor of indigenous genomics Alex Brown was granted USD $5 million to start the country’s first large-scale efforts in indigenous genomics. The funding came from the National Health and Medical Research Council (NHMRC). The consortium brings national leaders in indigenous health, data sciences, genomics, ethics, and population and clinical genetics to provide equal access to the life-changing potential of genomic medicine in vulnerable communities.

Implications of indigenous genome ethics

Wider implications of indigenous genome ethics may include:

Indigenous scientists and researchers sharing their respective genomic studies to advance research on potential treatments for their communities.

Governments collaborating with research institutions and healthcare professionals to improve regulations and policies protecting Indigenous communities from being exploited, misrepresented, or underrepresented in medical research.

Increased opportunities for Indigenous scientists and geneticists to be included in nationwide genomic research.

Enhanced personalized medicine and bettered medical treatments for Indigenous peoples, including more access to niche healthcare services like gene therapies.

Enhanced understanding and respect for Indigenous knowledge systems in academia, fostering more inclusive and culturally sensitive research practices.