Krystal S. Tsosie, Assistant Professor of Medicine from Vanderbilt University presented a scientific and moreover insightful approach to her research on genomic testing in The Controversial Nature of Genetics Research in Native American Communities. Tsosie was born in Shonto, Arizona within the Navajo County, and has conducted research alongside various groups.
The topic of discussion was near and dear to her heart, explaining that career aspirations changed when discovering her ability to help and still conduct research alongside her tribe.
Tsosie began her presentation by defining genomics for the audience, a branch of genetics, and explained the field’s attempt to organize and analyze genome structures. This improves scientists’ and doctors’ ability to pinpoint the genetic location of a disease or disorder in genetic structures.
A clinical study conducted between 1932 and 1972, the Tuskegee syphilis experiment, was Tsosie’s prime example of discriminatory clinical research. Historical controversy stems from researchers failing to treat individuals they knew carried the disease, and continued to keep them ignorant of the infection. Awareness of this destructive experiment didn’t arise until 40 years later, bringing about government organizations that would implement checks and balances for future research. The Office for Human Research Protections (OHRP) was created within the U.S. Department of Health and Human Services (HHS) in order to safeguard all from seemingly scientific, however truly malicious endeavors.
She posed the question, “are there existing roles for constructing studies to improve genetic study recruitment?” and shortly answered her own question negatively. Research participation within Native American tribes is often lacking due to ulterior motives within certain “scientific” groups as well as the obvious distrust of scientists who share little to none of their findings with tribal and community members.
Scientists and sociologists are invited whenever the opportunity arises to study a Native group’s genome, and this has been taken advantage of when research conducted isn’t relevant to the research a community originally consented to.
Using one group of people to discuss a disease one or more populations struggle with completely misrepresents the purpose of genetic research.
Consent was the largest issue within Tsosie’s presentation. Its relevancy was obvious when she spoke about bias and misleading research founded on even more unscrupulous gathering methods. The creation of wrong conclusions from reading bias research is unscientific and must be refined if conclusions are to be thesis-worthy, and lead to more practical applications.
Health issues have been discriminately studied among mostly Europeans participants, creating an obvious gap in who’s compatible with modern medicine. Incorporating responsible and safe measures when researching genetic ancestry can improve clinical care for people of mixed or different race. Native American communities need community members and caring individuals from outside to take seriously health disparities that set minority groups apart from those who conduct discriminatory and unscientific research.
An over representation of European populations in clinical research extends to a broader consequence of healing methods based on the genes of a dominant group being prescribed to all.
Tsosie concluded with a few statements on how she hopes to make her work benefit more and more communities “in a culturally compassionate way” as she grows in her profession.
Tom Strawman will speak in the next installment of the Spring Honors Lecture Series on Native American Culture, next Monday, Apr. 20.
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