Saturday, June 19, 2010

Ethical and unethical use of biological samples

Researchers have had reasons -- generally good scientific reasons -- to gather, store or ship human tissues and blood for research purposes. But communities and individuals may be wary of such activities nevertheless: what will be done with my biological sample? For what reasons? How long will it be stored? Will it be shared with others? Which others? Will they be put to currently unforeseen uses? Who owns my sample, particularly if something commercially interesting results in its use? What if the researchers discover something medically important about me, through the analysis of my sample? Will I come to know about it? Given traditional deference to those more educated, more wealthy and with more social power, these concerns about the destiny of human biological samples have been muffled in the past. But they were probably always there. Developing World Bioethics this month published a fascinating paper by Melissa Graboye about research done in East Africa a half century ago, where it is clear that traditional villagers being studied wanted to know more (and have more say) about what was being done with their blood.

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.

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Blogger drjudystone said...

Thank you for the thoughtful post and bringing more attention to this problem. In addition to informed consent (or lack thereof), you provide more examples of the need for better skills in cultural competence. Too bad that there is little attention paid to teaching about different cultures and respect for others.
I have found similar stories about difficulties obtaining informed consent in Tibet and among Maoris especially intriguing.

Judy Stone, MD

Author, "Conducting Clinical Research: A Practical Guide for Physicians, Nurses, Study Coordinators, and Investigators"

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