Monday, April 13, 2015

Yanomami blood sample return: Some update information

On March 25 we posted a discussion of research ethics that was brought about by the return of some blood samples we had for many years housed in our lab at Penn State.  We explained why this had been contentious, and why many aspects of the demand for return were based on reasons wholly unrelated to anything done by the investigators with these samples.  Rather, the concern had more to do with experiences of the Yanomami tribal members over many years, due to outside interference with their lives.

There was a flurry of publicity from various news sources, showing the return of the samples (links below), and we would like to correct some of what was said.  In many of the stories, the source of the samples was mis-attributed to the University of Pennsylvania, when in fact it was Penn State.  There also seems to be a misapprehension or allegations in the news stories that the samples were collected without permission and implying that we were the ones who collected them.  Whatever one's views about how the Yanomami were treated and their experience of the outside world, or how they currently feel about the samples, these involve quite irresponsible mistakes.  My lab has housed a set of these samples for many years, after the person (JV Neel) whose group collected them had retired, he divided the samples up for safekeeping and curation into three sets, one for the Anthropology department at Penn State, one for an investigator now at Penn, and one for the National Cancer Institute, where they had various potential research interests in them, in case new methods became available that could enable things to be learned about cancer that the original methods, of the '60s and '70s, were incapable of resolving.  Michigan would have destroyed them otherwise.

There is plenty of room for debate about scientific studies by the industrialized nations, of indigenous or dependent populations.  The nature of informed consent was discussed in our earlier post on this problem.  Feelings expressed now by Yanomami representatives may be entirely sincere and even justified from their point of view.  At the time, the filming of the collections and the trade goods and whatever else was involved offered in exchange as part of the Yanomami's participation, including the provision of the blood (and other biomedically related samples and information) made the collection seem totally voluntary.  The degree to which cultural and/or power differences and the like led to misunderstanding about the samples and what was to be done with them is impossible for us to know, and there are differences of views for many reasons.

Not the least of the problems is the passage of decades of time, and of the lives of both investigators and subjects.  Retrospective judgments about informed consent, coercion, recompense, and relevance of the anthropological studies to the Yanomami experience with the outside world, are important issues, but not ones we ourselves can judge.

It should also be pointed out that the issues about the Amazonian indigenes and the outside world are not new.  Indeed, around 1800, when Alexander von Humboldt visited the Yanomami general area (and one of the main sites of the work now in question), there were already long-established mission stations with a lot of western culture already brought into the area.  So external influence, helping, and/or meddling with the lives of the indigenous populations have a deep ancestry.  Hopefully, newer ethics or protections will prevent further problems of this kind.

A few of the stories (in English, Spanish and Portuguese):

- BBC:
- American Indian and Friends (BBC):
- News 24 (AFP):
- 9 News, AustrĂ¡lia (AFP):

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