Summary:

In the age of the pursuit of precision medicine and late global capitalism, modern nation states and private biotechnology companies are using the human genome as the metric by which social, political, and economic salience is based. Modern popular science and media is aware of cases like that of Henrietta Lacks, but less is well known by the public with respect to other means of the exploitation of human genetic data. At the heart of the case of Henrietta Lacks is the denial of self-determination or autonomy with respect to one’s biological material, genetic, data, and medical information. This is an ethical issue that has transformed over time rather than being redressed by public outrage. 

Colonialism is a system, a process, not an epoch. With this understanding we can better see how state institutions and private corporations have come to exploit biological and genetic data for the purpose of generating a profit in the biomedical and pharmaceutical industries. The trademarking of DNA sequences and cell lines of colonized peoples is little different from the stealing of land and chattel enslavement. By understanding settler colonialism as a process, we can come to understand the ways that colonized peoples’ biological and genetic data become the property of a pharmaceutical company, or better yet, a modern nation state.  

As described by Historian Harriet Washington, newer colonial interests have simply changed focus from the earlier search for economically significant raw materials to the modern quest for medically and scientifically significant cells and DNA. Biocolonialism, like other forms of colonialism, turns human cell lines and DNA sequences into an information economy from which capital can be endlessly extracted and circulated. As Jenny Reardon and Kim TallBear illustrate in their article “Your DNA Is Our History”, the patenting and trademark of Indigenous people’s cell lines and genetic data is also implying that the DNA of colonized peoples is the property of colonial states and/or owners of the means of production in industry.  In this report we briefly discuss two examples of biocolonialism in practice, focusing on the corporate and state seizing of genetic data for scientific/medical gain and/or profit. I will cover the Ngäbe-Buglé Indigenous peoples of Panama as an example. 

Background and Purpose:

…26-Year-Old Ngäbe-Buglé Woman, Mother of Two…

In 1990 the U.S. government sought to patent a virus from the cells of a 26-year-old Ngäbe-Buglé (Guaymi) Indigenous mother of two from Panama (Washington 2011:291). She was among the three seropositive Ngäbe-Buglé Indigenous people whose samples were taken in American scientists’ attempts to better understand the Human T-cell Lymphotropic Virus type II (HTLV-II).7 The researchers were Michael D. Lairmore, Steven Jacobson, Fernando Garcia, Barun K. De, Luis Castillo, Mario Larreategui, Beverly D. Roberts, Paul H. Levine, William A. Blattner, and Johnathan E. Kaplan who worked at the Center for Infectious Disease Control (CDC), National Institutes of Health (NIH), and the National Cancer Institute (NCI) in the United States and Gorgas Memorial Laboratory in Panama City, Panama.  The Gorgas Memorial Laboratory was run by the United States government until 1990.  The purpose of the study involved obtaining information on HTLV-II from a population that the researchers understood as generally isolated and lacking the typical risk factors like drug use for HTLV-II among HTLV-II seropositive patients in the United States.  Researchers stated that the project gave them the opportunity to gain insight on the HTLV-II virus in a natural environment. The research participants included eleven Ngäbe-Buglé Indigenous peoples who traveled to Changuinola, Boca del Toro Province in Panama to work at the banana plantations where they were recruited for the study.  The researchers obtained oral consent from the research participants to collect blood samples and peripheral blood mononuclear cells were cryopreserved.  Staff and physicians conducted medical checkups and interviews with research participants and their family members.  Polymerase Chain Reaction was performed to test the serum samples for the HTLV-II antibody and primers were used to amplify 1 microgram of genomic data.

Significance:

26-Year-Old Ngäbe-Buglé Woman, Mother of Two…

The important aspects to report about this study include the finding that the HTLV-II antibody is present in populations who do not use recreational drugs or participate in ritual scarification, thereby challenging the assumptions researchers and medical practitioners made about risk factors in patient populations in the American settler state. One of the most difficult complications regarding this study is it did not violate regulations at the time, solely by technicality alone. One significant difference is that today, written informed consent would likely have been the means to obtain consent instead of oral consent. Participants received nothing in return for their participation and to this day no one has been punished for this research study.

Critique:

26-Year-Old Ngäbe-Buglé Woman, Mother of Two…

This study failed to meet the Belmont Report principles in a variety of ways. While informed consent was technically obtained, it was done so via oral consent, which ultimately places the research participants at immediate risk of exploitation by researchers and institutions involved. The research participants were recruited under exploitative labor conditions in Panama, which specifically targeted the three major Indigenous groups in Panama and Costa Rica.  In that sense, the respect for persons principle was not met because the National Institutes of Health went on to submit a patent application for the cell line of the 26-year-old Ngäbe-Buglé Woman, mother of two, who was one of the three seropositive patients out of the total sample (N = 11). No respect is had for the woman whose biological material was stolen, to this day we little is known about who she is besides the profile that identifies her cryopreserved sample and mentions of her in the research articles published. From the perspective of the researchers, this project was believed to be providing new information on a virus that could provide helpful information to American biomedical experts. In the case of beneficence, we must then ask if this benefit to society was taken at the expense of the self-determination and freedom of the research participants. In this case, this study also fails to meet the principle of beneficence. If this study were completed today, we would obtain informed consent via written documentation and providing information sessions to research participants. This study operated from the position of helicopter research providing nothing to research participants and their local communities.  Another thing we would do differently is ensure that every individual has self-autonomy and determination over their DNA sequence and cell line. So, if patenting is to be done, each individual will own the patent to their biological material and provide permission to access the material via the informed consent agreement. Though the Ngäbe-Buglé peoples demanded that the cell-line be returned in 1990, the NIH did not rescind their patent application till 2004 when they began to receive bad press in the public media. Though the patent application was withdrawn, the NIH still has access to the Ngäbe-Buglé woman’s cell line and has yet to return it. Thus, the principle of justice was not met by this project. The first step towards justice in this case requires the return of biological material and information to the individual it was taken from.

References

Reardon, J., & TallBear, K. (2012). “Your DNA Is Our History.” Current Anthropology, 53(S5), S233–S245. http://doi.org/10.1086/662629

Lairmore, M. D., Jacobson, S., Gracia, F., De, B. K., Castillo, L., Larreategui, M., et al. (1990). Isolation of human T-cell lymphotropic virus type 2 from Guaymi Indians in Panama. Proceedings of the National Academy of Sciences, 87(22), 8840–8844. http://doi.org/10.1073/pnas.87.22.8840