Fulfilling the Human Microbiome Project (henceforth known as HMP)’s tantalizing potential requires a comprehensive sample of human microbiomes. And when I write comprehensive, I mean comprehensive. Comprehensive as in ideally every population of humans on the planet would participate. The study published this summer only sampled 242 ‘healthy’ Texans and Missourians and is therefore what its title claims it is: a framework for microbiome study. To get to the really juicy bits of this vein of scientific inquiry we need hugely diverse samples. And here is the rub: how do researchers ethically collect HMP data from hesitant (or un-) willing populations – for example, indigenous North American communities?
Many Native American communities are rightfully wary of participation in large government or corporate funded research due to the U.S. government’s well-documented, sordid history of exploiting and oppressing them. (Good website detailing these issues). To conquer this broad but fundamental problem the National Institutes of Health (NIH) turned to University of Oklahoma anthropologist Dr. Paul Spicer.
Dr. Spicer is spearheading an ongoing study that according to the abstract:
“… is an investigation of the implications of research on ancient and contemporary human microbiomes for the social and ancestral identities of indigenous people. It will engage indigenous communities on the U.S. Southern Plains (Apache, Caddo, and Kiowa nations) and in the Andean region of Peru (Aymara, Quechua and Uros-descended communities). Community members will take part in focus groups, individual survey interviews, and public meetings to discuss the ways in which local variations in human microbiomes related to differences in environment, lifestyle and culture may have implications for health disparities, population histories, and social and ancestral identities. Local communities also will be engaged in discussions about how to conduct ethically and culturally appropriate microbiome research using contemporary samples from some members.”
In the course of my research into the HMP (for a class article) I happened to speak with Dr. Spicer. He was unable to identify the specific Oklahoman tribe that is participating because they have not yet come to a concrete consent agreement, but the tribe was willing to participate in the HMP and Dr. Spicer’s study. He was, however, able to explain the two fundamental concerns of the tribe in regard to their HMP participation (which echo the sentiments of many tribes regarding many different studies):
- Exploitation: The OK tribe wants to guarantee any garnered data will be shared with them and ensure they will have a stake in any potential benefit resultant from the research. Dr. Spicer clarified this concern with a real-life example: Researchers conduct a study and publish findings regarding specific information detailing a genetic disease; this information is now public knowledge. A big pharmaceutical corporation then takes this public information, develops a drug to cure (or more likely treat) it, and copyrights said cure (or treatment). It just so happens the people who participated in the original research can’t afford the drug, or it isn’t made available to them. What then? Historically it has be a matter of drug companies basically (but not so crudely) saying “too bad you guys can’t afford this cure, but thanks for your genetic data!”
- Purpose: Dr. Spicer explained that the OK tribe was also concerned that the research might be a waste of their time (and of course we all know time = money). He told me there are past examples of tribes volunteering for studies (not unlike the HMP) and no tangible benefit resulting from the research. Meanwhile, the tribes had been promised by the researchers that this study will help address serious problems facing their communities – like diabetes, obesity, alcoholism, etc. The OK tribe wanted to make sure the HMP was worth their effort, effort that might have been spent on more direct, efficient approaches to elevate their health and community standards (i.e. direct interventions like diet programs or educational programs).
Dr. Spicer, in a departure from how these studies are normally conducted, decided to address the more abstract ethical quandaries through surveys, focus groups, etc. while simultaneously conducting the microbiome research. The results are not published because discussions with the tribe are ongoing, but Dr. Spicer told me some aspects of the agreement: the HMP has agreed to not clone any novel microbes found within the tribe’s collective tissues and the tribe is guaranteed access to all resulting data on their microbes.
Addressing the exploitation concern is, like the issue itself, more complex than definitive information-sharing agreements. Dr. Spicer told me they (the researchers and the OK tribe) are looking to patient advocacy groups like PXE International as a model. This group and others like it are dedicated to providing a resource to disease sufferers by supplying them with all the available information about their condition and related medical research. When the information is collected in this sort of patient-accessible depository it circumvents big drug corporations from hoarding the knowledge and profiting from it years later when they develop a (probably expensive) copyrighted treatment.
Stumbling upon online reviews of the socio-ethical-legal implications of the HMP such as Dr. Spicer’s study was an interesting sort of eye-opener for me. I tend to get so focused on the cool biological aspects of medical research I stop thinking about the people it might affect. The fact of the matter is all science involving people must be conducted in such a way that is ethical and considerate to the rights of all involved (example: psychology before ethical review boards ); sometimes it’s necessary to take the lab goggles off, step back from the cells in the petri dish, and look at the people.
Relevant or Interesting Websites: