Ethical, Community-Based Genomics
Less than 1% of participants in genomics research are of American Indian descent. This reflects a variety of factors including misconduct by researchers, under-recruitment, and perceived lack of clinical utility. Yet, many women of the Turtle Mountain Band of Chippewa Indians in Belcourt, North Dakota, have participated in the Preeclampsia and Genetics Study since it began 15 years ago.
Studying genetic associations with preeclampsia was the aim of Dr. Lyle Best, an Indian Health Services family practitioner who started the study at Turtle Mountain Community College (TMCC). The lab has since associated three genetic variants of the C-reactive protein (CRP) to preeclampsia, previously unknown in Chippewa women. We have also observed that women with preeclampsia are at greater risk of developing hypertension later on in life.
The key to maintaining such a long research presence in the Turtle Mountain community is to uphold an equitable relationship with the tribe. Being part of a tribal college helps in that goal. While “community-engaged research”— methodologies that ensure communities are involved in every step of the research process—is relatively new in genomics, the Preeclampsia and Genetics Study at TMCC has consistently employed culturally competent practices.