RETURNING BLOOD SAMPLES TO THE YANOMAMI

Robert Borofsky
Center for a Public Anthropology
Hawaii Pacific University

STAGE ONE: The issue seemed fairly straightforward – before it became a question of legal liability. Initially, one's perspective on returning the blood to the Yanomami came down to where you stood on a continuum between advocating for science and advocating for indigenous rights. At stake were blood samples collected from the Yanomami during the late 1960s by an American research team that included James Neel, a geneticist, and Napoleon Chagnon, an anthropologist. [S1-a] Unbeknownst to the Yanomami, the blood samples were subsequently stored at a number of American institutions, most prominently Penn State. The Yanomami only discovered this fact following the publication of Patrick Tierney’s Darkness in El Dorado in 2000. Tierney wrote the Yanomami blood samples were stored “in an old refrigerator at Penn State University.“ [S1-b]

For the Yanomami, this was, deeply upsetting. Some Yanomami felt they should be compensated better than they had been since the samples were helping researchers in their careers. But many more felt it was a religious sacrilege to retain, rather than return, the samples so these deceased relative’s blood could be properly buried in accord with Yanomami tradition. [S1-c]

The Yanomami had been promised that their blood samples would be used to learn more about the diseases ravaging them. [S1-d] (They were collected, it should be noted, in the midst of a measles epidemic.) Unfortunately, this did not occur. A few researchers used the samples for their personal research. But, judging from the publications produced over the more than forty years the samples were stored at various institutions, they were not widely studied nor were they ever used in a way that directly benefitted the Yanomami. Hence, what appeared to be a conflict between science – embodied in the Human Genome Project – and indigenous rights was, for the first few years at least, mostly a conflict between those who wanted to save the samples for some vague, future use and the Yanomami who wanted the blood returned for religious reasons.

But the frame of reference changed significantly when, to help resolve the dispute, lawyers became involved. The focus then turned to a question of legal liability and the fear of being sued.

STAGE TWO: Davi Kopenawa, a prominent Yanomami leader in Brazil, first learned about his relatives’ blood samples being stored in the United States from Bruce Albert during a conversation about Tierney’s book. The Pro Yanomami Commission (CCPY), working with Kopenawa, brought the matter to the federal attorneys of the MPF (Federal Public Ministry) residing in Roraima, the state where most Yanomami lived in Brazil as well as in Brasila. In 2002, Deputy Attorney Ela Wiecko Volkmer de Castilho corresponded with Dr. Kenneth Weiss, who was storing Penn States’ samples. [S2-a] (Subsequently, Albert wrote Weiss, including a note from Kopenawa.) [S2-b] Paralleling this correspondence, key Yanomami wrote letters to the Indian Resource Center in Washington D.C. [S2-c] Little resulted form this correspondence. In 2005, Deputy Attorney of Brazil Mauricio Frabretti, wrote to Weiss [S2-d] as well as Dean Susan Welsh of Penn State [S2-e] and Binghamton University’s Vice President for Research, Dr. Gerald Sonnenfeld [S2-d]. Once more, little happened. Welch’s response emphasized the considerable problems preventing Penn State from returning the blood. [S2-e]

STAGE THREE: Penn State’s response turned more positive in 2006, following the involvement of the Center for a Public Anthropology working in collaboration with students from across North America. Emails from these students to Weiss had little effect. [S3-a] But a formal letter to Penn State’s President, Dr. Graham Spanier, from the Center combined with student letters supported by scores of other students [S3-b] had a positive impact. One need only contrast Provost Dr. Rodney Erickson’s reply to these letters [S3-c] with Welch’s reply to Fabretti to see the difference.

At roughly this same time, Dr. Joseph Fraumeni, a director within the National Cancer Institute (NCI), in correspondence with Deputy Attorney Fabretti, indicated the Institute was “willing to return the [blood] specimens to Yanomami representatives.” [S3-d]. Knowing this, Provost Erickson suggested that Penn State’s transfer of the blood “could ideally take place at the same time and under the same circumstances” as the NCI’s [S3-c].

But what seemed reasonable at first, became problematic. While Dr. Fraumenini’s assistant, Dr. Karen Pitt, made a significant effort to facilitate the return of the samples, others – at NCI, at Penn State, and in Brazil – obstructed the process, at times spreading false rumors.

STAGE FOUR: It remained unclear for several years who or what was delaying the return of the blood samples. American lawyers insisted on a formal legal agreement waiving all liability and warranties on their part related to the blood. The Brazilians, puzzled by this insistence and not sure what they were consenting to, hesitated signing such an agreement. Deputy Attorney of Brazil, Mr. Antonio Morimoto, suggested the blood samples simply be turned over to the Brazilian Embassy in Washington, D.C. [S4-a] But Penn State and the National Cancer Institute refused. The fact that the blood samples were going to be ritually disposed of soon after being returned to the Yanomami, [Globo video S5-c3] and was part of the final agreement [S5-b1a 2.4] was irrelevant to the NCI’s lawyer. She insisted an agreement waiving liability be signed before the samples could be returned. (The final transfer agreement held NCI “harmless with respect to any action arising from the use of Samples prior . . . to [the] transfer” [S5-b1a, 2.3].)

For several years there was a standoff. On one side, Penn State and NCI insisted they wanted to return the blood and, on the other, the Brazilian government insisted it wanted the blood returned. But they could never agree on how it would be done.

Given this situation, those wanting the blood returned had only one option – to pressure the parties involved to come to some agreement. In the United States, the Center for a Public Anthropology repeatedly contacted key figures involved, assisted Deputy Attorney Morimoto [S4-b] (as well as Bruce Albert) in their efforts when it could, and sought to attract media attention. [S4-c1, S4-c2, S4-c3, S4-c4, S4-c5, S4-c6, S4-c7, S4-c8, S4-c9] On the Brazilian side, returning the blood samples became a priority for the Hutukara Yanomami Association (HAY), a Yanomami NGO created in 2004 with CCPY assistance, and partner organizations, especially the Instituto Socioambiental (ISA) (that in 2007 absorbed CCPY). Davi Kopenawa, HAY’s president, played a key role in keeping the issue alive, encouraging articles in Brazilian, French, and British media [S4-c1, S4-c2, S4-c3, S4-c4, S4-c5, S4-c6, S4-c7, S4-c8, S4-c9].

STAGE FIVE: Ultimately, the Brazilian pressure was key. Through multiple meetings with the MPF’s attorneys, ISA learned, quoting ISA’s skilled lawyer, Ana Paula Caldeira Souto Maior: that “new Brazilian government agencies were brought to the case due to the requirements made by the contacted American institutions . . . [relating to] a Biological Material Transfer Agreement. Besides the Foreign Ministry, ANVISA [Brazil’s FDA equivalent], and the AGU [the Attorney General of Brazil] were also involved [because of American concerns over] . . . the safety conditions and the final destination of the samples.” Finally, “MPF was able to solve the bureaucratic obstacles on the Brazilian side and, through clarifying conversations with the American Institutions, felt able to sign the Agreement for the return the samples insisted upon by the Americans.”

In April 2015, Pennsylvania State University returned their blood samples, 2693 vials. (These samples included those that had been stored at Binghamton University.) In September 2015, the National Cancer Institute returned their samples, 474 vials. Readers can peruse, if they wish, the formal transfer agreements [S5-a, S5-b1, S5-b1a, S5-b2].

The transfer of the samples back to the Yanomami was highlighted in the Brazilian media [S5-c1, S5-c2, S5-c3, S5-c4, S5-c5, S5-c6, S5-c7], Brazilian government reports [S5-d1, S5-d2, S5-d3]and British media [S5-e].

It should be noted that none of the rumored dangers emphasized by the transfer’s opponents – which made the transfers into such a complicated legal matter – ever came to pass, either in terms of spreading disease or the Yanomami suing the American institutions. Instead, the return of the blood samples was a deeply moving moment for many Yanomami. One can listen to Davi Kopenawa’s comments regarding the return of the samples in a video. [S5-c4]

The return of the blood samples also represents an important moment for American anthropology. Countering various criticisms lodged against the discipline in print [S5-f] and in film [S5-g], the return of the blood constitutes a clear case of American anthropologists helping the Yanomami – on Yanomami terms, not on their own. It portrays American anthropology in a much more positive light vis-à-vis the Yanomami than has been the case in recent years.

Documentation

STAGE ONE
S1-a Borofsky, Robert et al. 2005 Yanomami: The Fierce Controversy and What We Can Learn From It. Berkeley, CA: University of California Press. Pages 42 and 153
S1-b Tierney, Patrick. 2000 Darkness in El Dorado: How Scientists and Journalists Devastated the Amazon. New York: W. W. Norton. Page 51
S1-c Borofsky 2005, page 65
S1-d Borofsky 2005, page 223

STAGE TWO
S2-a Castilho-Weiss (7March2002), Weiss-Castilho (8April2002)
S2-b Albert-Kopenawa-Weiss (22October2005)
S2-c1 Yanomami letter (13June2002)
S2-c2, Kopenawa’s letter (11November2002)
S2-d Fabretti-Weiss-Sonnenfeld (4January2006)
S2-e Fabretti (29July2005)-Welch (3January2006)

STAGE THREE
S3-a Students-Weiss (22September2005)-Weiss-Borofsky (14October2005)
S3-b Borofsky-Students-Spanier (17February2006)
S3-c Spanier-Borofsky (23February2006), Erikson-Borofsky (27February2006)
S3-d Fraumnei (NCI)-Fabretti (13February2006)

STAGE FOUR
S4-a Morimoto-Erickson(19Jan2007)
S4-b Morimoto-Borofsky (17August2007)
S4-c1 Chronicle (3March2006)
S4-c2 Napepe-Yanomami (23April2007)
S4-c3 Al Jazeera (28Jan2009) – video
S4-c4 PennLIve (16May2010)
S4-c4a Patriot News(Long)-Borofsky (17May2010)
S4-c5 Folha de S. Paulo (9May2010)
S4-c6 Independent (25May2010)
S4-c7 Science (4June2010)
S4-c8 NH Public Radio (2June2010)
S4-c9 Le Monde (29January2011)

STAGE FIVE
S5-a Penn State Certificate of Transfer (23Mar2015)
S5-b1 NCI Transfer Agreement (Portuguese)
S5-b1a NCI Transfer Agreement (English)
S5-b2 Kopenawa’s Signed Receipt (22Sept2015)
S5-c1 Amazonia Real (29March2015)
S5-c2 Globo (3April215)
S5-c3 Globo (5April2015) video
S5-c4 Globo (21September2015) – video
S5-c5 Socioambiental (1April2015)
S5-c6 Socioambiental (13April2015)
S5-c7 Socioambiental (25September2015)
S5-d1 MPF (7April2015)
S5-d2 MPF (23August2015)
S5-d3 MPF (21September2015)
S5-e BBC (3April2015)
S5-f Tierney 2000
S5-g Padhila, José 2010 – Secrets of the Tribe (Film). Distributed by Documentary Educational Resources. Running Time 110 Minutes.