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Executive Summary: Enhancing Genomic Research Through a Native Lens

By LeManuel Lee Bitsoi (Diné), Ed.D.

Prominent American Indian/Alaska Native scholars have argued that non-Native researchers and academics have not always understood the real challenges that American Indians/Alaska Native communities face. Native scholars often draw upon their own cultures and upbringing when challenging the status quo in science and research.

One of the major challenges Native people face in scientific research is a lack of understanding and respect for Indigenous viewpoints and epistemologies.  This is readily apparent in genetic and genomic research.  Some Native people have been hesitant to become more involved in such studies for fear of exploitation, concern about human migration theories, and other issues related to the history of mistrust of non-Native researchers and their objectives.  Moreover, genetic information is not just about a person, but also about his/her family, and possibly an entire tribe or group of Native people.  Furthermore, our cultural knowledge and creation stories emphasize that we are all connected.  For example, the Lakota observe life with “Mitakuye Oyasin,” to acknowledge and honor the connections that we have as people with plants, animals, marine life, and even microscopic organisms.

Through bioethics, Native people are gaining new tools for influencing and shaping biological research within our communities.  Through bioethics, we can pursue career opportunities in ethical, legal and social aspects of genomic research, particularly “ELSI,” which is an acronym for ethical, legal, and social implications of genomic research.

As we increase the number of Native scientists focused on genome sciences and bioethics, we can better assist our communities with regulation of research studies and development of protocols at the tribal governance level and beyond.  While we have made inroads in increasing our number of science, technology, engineering, and mathematics (STEM) graduates at all levels, we are still lagging behind in degree attainment to address our health disparities and challenges.

We can increase our numbers in science and research fields by capitalizing on various training programs such as the Minority Action Plan (MAP) Program of the National Human Genome Research Institute (NHGRI) of the NIH, the Indian Health Service (IHS) Scholarship Program of the Department of Health and Human Services, and the Tribal Colleges and Universities Program (TCUP) of the National Science Foundation (NSF).

By making cultural connections in science, we can encourage our aspiring Native scientists to understand that science has always been a part of our tradition. We need to remind our students that biology has always present in the agronomy and agricultural techniques of Native people, most notably in the practice of planting corn, beans and squash next to each other.  Just because these ways of knowing were not written down does not mean that they are not valid.

By utilizing emerging research methodologies, such as community based participatory research (CBPR), we can take active roles in scientific research.  Furthermore, by using CBPR, we can assist in developing Indigenous institutional review boards to encapsulate culturally appropriate consultation and even better informed consent process to assist our communities.

In summary, we know that much of scientific research conducted mainly by non-Native researchers has not produced results that Native communities need to address their health disparities and challenges. So, as we train more Native researchers and scientists, we can democratize scientific research--without fear of exploitation--to address the real life concerns that our communities face.  By observing “Mitakuye Oyasin,” we can conduct research in respectful ways and assist the non-Native community to better understand how we acknowledge the sacredness of our connections with nature.  Using a Native lens, we can inspire future generations of Native scientists to pursue a multidisciplinary approach usingsociology, law, anthropology and business to address the multiple ethical, legal and social issues involved with scientific research. Moreover, we can affect change by capitalizing on training programs that are offered at national and institutional levels to produce a cadre of Native academics and scientists.  Perhaps most importantly, as scientists and researchers, we will be able to steer research studies and protocols, and eventually have an impact on policy to assist our people even more.

For more information about bringing a Native perspective to genomics research and increasing the numbers of Native people involved in science, please see the paper Enhancing Genomic Research Through a Native Lens.

How Do We Decide?

A Guide for American Indian/Alaska Native Communities

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