Ethical and unethical use of biological samples
Concerns about use of samples -- as well as informed consent for their use -- are being voiced increasingly louder by communities and their advocates. Last week, Science Magazine ran a piece about the return of blood samples (collected in the 1960's) from the United States to the Yanomano tribe in Brazil. The stored blood samples were a center of controversy since the publication of Darkness in El Dorado: How Scientists and Journalists Devastated the Amazon, in which journalist Patrick Tierney accused anthropologists of exacerbating a measles epidemic in the region, among other abuses. Another recent controversy involves the Havasupai tribe in Arizona: the University of Arizona in April agreed to settle with members of the tribe to the tune of $700,000 for misusing their samples. By 'misuse', tribal representatives claimed that researchers used samples originally for diabetes research to evaluate the genetic basis of schizophrenia, which could stigmatize the tribe; another study used the samples to examine inbreeding, which raised concerns about stigmatization, given a cultural belief that inbreeding brings harm to one's family; another study used the samples for evolutionary genetics, which indicated that contrary to the tribe's origin story, its ancestors had migrated across the Bering Sea. Then, of course, there is the recently publicized and strange tale of Hendrietta Lacks, a poor Southern tobacco farmer whose cancer cells, taken without her knowledge, became one of the most important tools in medicine.
These controversies are an invitation to rethink the ethics of using human biological samples. We have all gained in many ways from the study of such samples in the past, and the collection of such samples is not inherently dubious or necessarily involves exploitation, even when the research is focused on traditional, relatively isolated or minority communities. Ethical use does require delicate balancing of the interests of researchers (and public health) and those of the studied community, and underlines the importance of community engagement in research. Some researchers shy away from the latter, arguing that it is too time-consuming and difficult. But the recent cases indicate that when it comes to tissues and blood, getting into ethical hot water is getting all too easy.