In the United States, collecting human microbiome samples requires informed consent, as well as approval from an institutional review board (IRB) that provides regulatory oversight. Most researchers meet this bar; those who don’t are criticized by the community.
In 2014, for example, microbiome researcher Jeff Leach made waves when he used a turkey baster to give himself a faecal microbiota transplant (FMT) using faeces from a Hadza man. By 2015, some researchers who had previously collaborated with Leach, including Knight, had distanced themselves from him. As Knight recalls, he heard concerns from other researchers who worked with the Hadza that Leach was not obtaining the proper permits or consent from participants. His self-administered FMT, Knight says, was something that “our research-ethics group would certainly not have allowed”.
By this time, however, many of the samples Leach had collected had already been sequenced and the data made publicly available. Additional samples still sit in lab freezers; Knight has some of them. At one point, Knight hoped that there might be a way of retroactively obtaining approval and consent, but now he expects that the samples will be destroyed. “There is no ethical path forward to using them that I’m aware of,” he says.
Although most researchers obtain IRB clearance for their work, they could still aim higher. “We need to really separate what is legal versus what is ethical,” says Crittenden. IRBs are just a legal minimum, and can be inconsistent, she says. “You can be absolutely above board legally and be conducting unbelievably unethical research in a community.”
For this reason, the Native BioData Consortium requires that the researchers whom it works with adhere to a higher ethical standard. Projects must be approved not just by an IRB, but also by a council of Tribe officials to ensure that the people providing samples will benefit.
Tsosie has received some push-back from scientists on this community consent process. “It’s often considered incongruent with the academic pathway of research,” Tsosie says. Researchers, who are under pressure to publish frequently, don’t think they have the time for it. “You get researchers who are like, ‘Oh, that’s too much work. And, you know, I technically don’t need to do it’,” she says.
When Crittenden decided to stop collecting biological samples from the Hadza, she embarked on a course of re-education. “I had to learn how to be a different scientist,” she says. “I had to learn different methods and methodologies. I had to learn different lines of enquiry. And honestly, I had to slow down.” For ethical standards to improve, she thinks that researchers need to be willing to move more slowly, despite incentives to do the opposite.
Funding agencies could be key to enabling researchers to take the time to do things properly. “As a scientific community, globally, we need to be thinking more about the fact that building relationships is part of the work,” says Anderson. Accounting for that time in the funding provided to researchers, he says, would make a big difference to the relationships between investigators and the communities that they study.
Alyssa Crittenden wants to help other researchers to operate more ethically. Credit: Josh Hawkins/UNLV
Alyssa Crittenden wants to help other researchers to operate more ethically. Credit: Josh Hawkins/UNLV
Although the field still has a way to go, Crittenden has seen improvements since she first decided to stop collecting biological samples from the Hadza ten years ago. At the time, when giving talks at various institutions, she remembers being asked to avoid talking about community-based research and ethics. “They invited me there for a scientific talk, not an ethics talk,” she says. But over the past few years, she has witnessed a change. Crittenden and other researchers, including Fox, Tsosie and Anderson, have published articles5–7 relating to ethical research with Indigenous communities, and there has been an uptick in the frequency of conversations related to such research, she says.
“When you know better, you do better,” she says, referencing a quote from US author and civil-rights activist Maya Angelou. Helping researchers ‘know better’ is something Crittenden takes seriously. “The responsibility is on me to articulate why this is necessary, why this is a critical step forward and why your science is better for it.”
doi: https://doi.org/10.1038/d41586-024-02792-w
