Engaging scientists from indigenous communities in genomic data

This is an important news article by Lizzie Wade in Science, covering the Summer Internship for Indigenous Peoples in Genomics: “To overcome decades of mistrust, a workshop aims to train Indigenous researchers to be their own genome experts”.

The internship is a program that provides training and information about genomic research for scientists who are members of indigenous groups around the world. The idea is to bridge the mistrust that has emerged from past interactions, where scientists took samples from communities without sharing anything back.

The article gives some background on the anthropological geneticist Ripan Malhi, who has helped to organize the program. I wanted to share this paragraph describing one of his early career experiences that epitomizes why such an effort is important.

[In Malhi's early career] he kicked off his effort with a lecture at a reservation in Northern California. It was the first time he had spoken with a Native American community, despite years of studying their genetics. Expecting to gather dozens of DNA samples, "I brought a bunch of cheek swabs with me," he recalls. But at the end of his talk on DNA variation and the importance of filling in sampling gaps, the room fell uncomfortably silent. "Then one person stood up and said, ‘Why should we trust you?’" Malhi remembers. "That's a formative memory. I had not learned about anthropologists going to communities, taking samples, and just leaving."
He got no samples that day.

As Kim TallBear, quoted in the article, puts it: “If you’re going to work with Indigenous communities collaboratively on genetics, you have to be willing to make lifelong relations”.

The point is, you cannot engage people as research subjects and then just disappear. The approach of scientists in the past to indigenous groups has been fundamentally exploitative: Scientists went to communities and got samples, then did analyses, published papers, and built careers, but provided no opportunity for research subjects to shape the research, and gave nothing of value back to the people who volunteered their time and genetic information.

Changing that bad history means making real collaborations in which the research subjects have agency and influence on the study design and research questions. I would add something not reflected in this article: Descendant communities should equally have the ability to influence the shape of research on DNA from ancient remains.

This is an article that has many observations and stories worth reading, and I plan to distribute it to my classes. I highly recommend it.