Title: Scientist or Vampires?
Abstract:
Due to native americans unique isolation their genome is one of extreme interest in biomedical research. In order to provide the means for genomic research to advance there needs to be a reform of trust between the individual as well as the native community they are involved in and the scientific community. Indigenous peoples have disproportionate rates of diseases including diabetes and alcoholism. The biomedical community has attempted to study these disproportionate rates and potential correlations with ingenious genetics. These attempts have brought misuse of biosamples which in turn have crippled the trust between the indigenous and scientific community. Trust can be formed when protections are made to look out for the interest of both the community and the individual.
Indigenous Individual:
Indigenous peoples have continually been targets for research because of their “disproportionate rates of disease” and “their relative isolation and the potential to discover rare or unique genotypes” (Taualii, 2014) which is why there needs to be emphasis on protecting these individuals. An indigenous individual could possibly donate biosamples with the hope of bettering the health and help the community. If later down the line they realize their own samples were used to dispute land claims, discredit their oral history and displace the community this could be emotionally grevious for the individual.
In order to navigate the biomedical terrain and be inclusive of indigenous ideals the biosamples need to be treated with a considerable amount of respect. One area where consideration and respect is needed is in the conflicting views of bodily autonomy between Native American communities and the biomedical establishment. Native Americans have a general belief in the integrity of the body” and a “holistic notion of the body that entails that they should not be separated from any body parts”(LaDuke, 2005). Activists and scholars who study genetic research and Native American perception have asserted that “in general [natives] do not view biological specimens as alienable and that they are opposed to the commodification of tissue and DNA”(Burhansstipanov, 2005). Biosamples are often viewed by the biomedical community as a commodity rather than a gift. The perception of donations as commodities has the potential to” have adverse effects on solidarity and altruism”(Ursin, 2010). Solidarity and altruism are key components to what motivates people to contribute their time, energy and body parts to research that has potential to help others. The commoditization of biosamples brings a lack of respect of indigenous donations and further deepens the barrier of mistrust between biomedical researchers and indigenous individuals.
Respect for indigenous people in the context of research can be mediated through ethical review boards. When researchers intend to use human subjects for research an Institutional Review Board (IRB) must determine if the studies potential benefits outweigh the potential risks to research participants. Human cells from biosamples can be used for the creation of cell lines. A cell line is a cluster of cells that can be continuously regrown in a lab with the purpose of being tested on for various projects. Although these cell lines originate from a biosamples donation it is not considered human subjects so any future studies using these cells lines do not need to go past a review board and therefore there is no ethical considerations of the individual. The institution that is storing the biosamples remain responsible to approve if researchers can obtain samples to use in later studies. With the initial consent of use with donated biosample it can be ensured that the participant is aware of what the research entails and if there is any conflict with beliefs. If there is a conflict with belief or values the individual can deny use or withdraw from the current study at any time. The issue presented lies in the research that uses the same samples later down the line. From various types of biosamples DNA can be extracted and through certain procedures this DNA can be immortalized via cell lines and used over and over again for numerous projects (Maschke, 2008).
Indigenous philosophy entails an emphasis on the spirit being tied in with the body and tension arises in other areas of research like privacy. In a study looking into the views of native americans they perceived their “DNA as a source of uniqueness, self and personhood into their own discourse on the subject... DNA is interpreted through lens of possessive individualism, in a language of proprietary rights”(Taualii, 2014).This sort of identification with DNA is directly in contrast with the standard of biomedical research that once biosamples are donated “ the property rights that you have are extinguished”(Taualii, 2014). Privacy laws do not extend a connection of body to sample.
The Health Insurance Portability and Accountability Act (HIPAA) is a federal privacy law that protects individual’s health information but may not extend to “identifiable genetic and medical information associated with biospecimens” (Maschke, 2008).Within the framework of these laws the piece of the body removed is disconnected from the self, not something apart of them anymore. The piece is something to be owned and manipulated by groups of people in a unknown location. It is in complete divergence of concepts of the holistic notions of the body in indigenous philosophy. If cells are immortalized then there can be an infinite use of biosamples and in turn an infinite misuse of the spirit.
These samples are often stored in biobanks after or during the research process. In indigenous philosophy samples are considered an extension of the body and therefore an extension of the spirit which leads to biobanks storing very sensitive material to indigenous people (Cordova, 2007). These biobanks must be properly regulated to ensure respect is maintained . The US has no comprehensive framework or laws that detail the guidelines biobanks must follow. This in turn makes rules regarding biobanking and research on biosamples confusing and opaque. Open consent is typically used when biosamples are collected which means that research conducted in the future on these samples is not disclosed. This unknown of future research that will occur can cause hesitancy of the individual to participate in research. One solution to this is the various types of consent available like tailored consent. Tailored consent involves allowing the individual to choose what sort of research their samples is going to. For instance they can approve “diabetes research but not stem cell research.” (Burhansstipanov, 2005). Indigenous individuals could have a guarantee that their samples are going to areas of research that will benefit their community. If individuals can choose which research it is going to and know that it will directly impact their community they might be more likely to participate.
Indigenous Community
Indigenous peoples have continuously been historically and continuously mistreated by those in power. It is important not to only protect the individual level but the group as a whole because of the repeated misuse of biosamples. Through genetics and ethically unsound use of biosamples there have been challenges made against communities oral history. The cause of apprehension from communities to participate in biomedical research can be found in inadequate privacy laws, fear of biological weapons and genetic testing. Indegenous philsophy generally eoncompasses the emhpahsis on the community and connectedness within it. The desire to protect the community can alienate them from the participating in biomedical research.
The participation of indigenous peoples in the biomedical research have had hesitancy due to concern over biosamples. Their concern stems from “a unique set of historical and social circumstances that position genetic research as part of a much larger political narrative” (Abadie, 2015). There are issues regarding the legitimacy of native americans history and claim to land. Increasingly genomic research has been used to dispute land claims “among Tibetans and Chinese, Azeris and Armenians and German citizenship claims by ethnic Germans in Poland, Russia and the Ukraine”(LaDuke, 2005). These tests are not perfectly accurate and are still being used to make decisions that are impactful to indigenous communities. Genetic testing is based on the search for specific markers that occur in higher frequency in certain populations. They are not searching the entire genome to determine genetic inheritance because they are only looking at selective markers thus leading to false positives and negatives. These tests which have the potential to be inaccurate are being used in other parts of the world to make grave decisions regarding indigenous lives and their homes.
Genetic testing and manipulation is also used in the creation of biological weapons which further the gap of trust with the science and indigenous communities. There is also social anxiety in the form of “theories which portray powerful agents exploiting or abusing a disenfranchised population… [and] a governmental use of genetic information to “wipe out” a particular culture or ethnic group, or the production of bioweapons for the same purpose”(Abadie, 2015) .Often genetics are used to manipulate different diseases to determine if they are weaponizable. If you are looking at selective markers of genes which correlate to a ethnic group they theoretically can be targeted with these weapons. Even though the United States biological weapons program was terminated in 1969 there are other avenues for the government to pursue this area (Franz, 1997). In 2018 the Air Force requested that METTS, a biotechnology company to conduct chemical and biological weapons research to determine the best counteractions to take against the agents (Air Force, 2018). Biological weapons need to be created in order to determine the impact that they would have individuals and the environment. So although U.S. is not intentionally producing weapons for the purpose of targeting minorities the fact that the technology is being actively researched is cause of concern. This may not be a fear that can truly manifest itself against minority groups but it does deepend the gap of trust between the scientific community and the potential indigenous research participants they are actively trying to seek.
In the past there have been major scandals of misuse of biosamples and the beginnings of skepticism in the scientific community can be traced back to a particular incident. Members of the Havasupai tribe had donated blood with the hopes of helping researchers find solutions to the diabetes that had plagued through their community. Over a decade after the donation of samples the blood from the havasupai tribe was used to support the bering strait theory. Blood samples were used to challenge the communities oral history without their knowledge or consent (Blanchard, 2017). Not only were the samples used to challenge their oral history but the they were also used in multiple studies that attempted to link mental illness like schizophrenia to the tribe and their ancestry( Blanchard, 2017). Scientists had challenged the group’s identity and origin with the false pretense that the donated blood samples were going to benefit the community as a whole. Oral history is how much of indigenous history is documented and this is deemed an unreliable source to academia. There is already tension of academia pushing aside the legitimacy of their history and stories and these group of scientists challenged the history even further through a different method entirely. Indigenous philosophy and ideals contain emphasis on connectedness and the community (Cordova, 2007). If donations have the potential to discredit their community in such a way it can be easy to see why there is reluctance to participate in biomedical research.
Privacy and protection laws regarding biospecimen are extremely opaque in the U.S and need to expand in order to protect minority groups like indigenous communities. Regulatory guidelines were initially created “for clinical investigations, making their application to epidemiologic and community-based research problematic” (Sharp, 2002). Another dimension to this issue is that privacy laws as they stand aim to protect the individual and not groups of people. Privacy can be described as “a duty not to obtain or spread information about me or the group to which I belong that is clearly not someone else’s business” (Ursin, 2010). It can be difficult to protect privacy when the samples are no longer under ethical consideration. IRBs no longer have diction over samples that are formulated into cell lines because it is no longer classified as a human subject. Because of this IRBs can not ensure respect in regards to the community or the individual. These samples are still impactful to the community and there is no sort of federal regulation on these ethical matters. There are still some regulatory rules and guidelines within the institution that holds the sample. Access for use in research can be approved or denied by the biobank institution and its policy. The biobank can approve or deny a request for research that wants to use biosamples. In the past biobanking inustions have been primarily public to have safer and more controlled of use of biospecimen. How decisions are made regarding who gets access to biospecimines themselves and the data associated with them are unclear, particularly in private biobanks. Biobanks can be public and federally regulated or can be private and dictated by their own policy. There is no definitive federal regulation or guidelines for these private intuitions and thus exploitation can occur. Indigenous philosophy places a lot of value on the community as “herd beings” and the relationship with the community (Cordova, 2007). If there is potential to be exploited on a community level it is unlikely individuals will participate.
When this type of treatment has been repeated over and over, it is not likely to be forgotten anytime soon. There is a gap of trust that needs to be formed between researchers and indigenous members as well as the tribe as a whole. “The primary barrier of participation has been a lack of trust in the government and private institutions due to the potential that biosamples will be exploited” (Abadie, 2015). In previous studies four different procedures have been suggested to mend the relationship between scientists and indigenous communities. First that there be “more education about biobanking, biospecimen research, and research in general” (Taualii, 2014). Second, that “members of other indigenous peoples and minority groups whose participation in biobanks is sought should be provided more opportunities to participate as researchers, educators, and in research agenda-setting”(Taualii, 2014). Frouth, “consent forms and protocols [should] include options to be re- consented each time a specimen is requested for use in research”1(Taualii, 2014). The limit of these suggestions is that the study only took views from native hawaiians and this doesn't even begin to touch the scope of views that encompass indigenous people. The interviews from the paper were from indigenous peoples living off the land and did not include tribal members living on reservations. Due to the small select group that was interviewed this lack of diversity displays the limitation of this particular paper as there are vast amounts of groups of indigenous communities.
Conclusion:
Samples containing DNA that can be used for genomic research must be stored in biobanks which is why biobanking is of peculiar concern for native americans. Biobanking can have the potential to correlate genes with various diseases and has a vast amount of potential in the biomedical world. Progression and efficient use of this technology is important to the expansion of biomedical community and the future health of people.
On many different levels the processes and laws surrounding biobanking impinge on native american individual and community beliefs, practices and position in society. Privacy laws in the U.S as they stand only aim to protect the individual. So far there have been insufficient protection of indigenous peoples as seen by the continuous exploitation of indigenous biosamples. Indigenous philosophy encompasses community and interconnectivity and it is important the community is protected for trust to be rebuilt. To reform trust there needs to be implementation of communal protections so that indigenous people can feel comfortable and safe contributing to the advancement of this area of research. This could happen through different forms of consent, more education on biobanking research and the indigenous people whose participation is desired have the opportunity to be involved as researchers and educators.