The Humans in Our Care | Julie Botnick

In 1951, Henrietta Lacks sought treatment for invasive, advanced cervical cancer. She died the same year, but her cells live on as HeLa, the first cells multiplied in a lab setting, which have contributed to breakthroughs in almost every field of medicine. Lacks was not informed her doctors took not just a diagnostic sample, but an additional, lab-bound research sample of her cancerous cells. She did not consent. For a half century, Lacks’ family did not know about their matriarch’s magical cells. When they learned about HeLa, they believed the actual woman was being cloned, poked, prodded, and irradiated. Were they wrong? Each of those cells contains the genetic material that was - is - Henrietta Lacks. Today, any HeLa research must get permission from the Lacks family as the representatives of Henrietta. 

Like a repository of cells, archives are not spaces where materials die; rather, they are places archival creators and subjects continue to live, where knowledge about them only grows. We can never know less about an archival creator or subject; even increasing our recognition of how much we don’t know about a person is an expansion of knowledge.

In the dominant Western archival tradition, records have been defined as the neutral byproducts of bureaucratic activity. But apology letters, locks of hair, recipe cards, and fanzines are not neutral and not bureaucratic. Rather, they are the byproducts of the most human of activities - loving, mourning, nourishing - and are as human as cells and tissues. I propose considering archival materials as human specimens, which recognizes the bodily labors of creating, protecting, processing, and accessing these materials. With this shift comes the immense and imminent need to protect the bodies in our trust. To this end, archives should set up ethical review committees analogous to Institutional Review Boards (IRBs) within their organizations to review practices around archival and curatorial description and proposed scholarly research on collections.

IRBs were set up in the 1960s in response to the progressive revelations of the Nazi medical experiments (1939-1945), the Thalidomide tragedy (1957-1962), and the Tuskegee Syphilis Study (1932-1972), plus dozens of other unethical medical trials. In each of these cases, the men in charge of the studies argued their actions were justified because with full free, prior, and informed consent, they would not have had open access to new knowledge horizons. However, it is not a surprise that the victims of these studies - children, prisoners, mothers, black men - did not look like the men holding the clipboards. IRBs were set up to protect the most vulnerable in society from the illogic that access to knowledge is more important than those from whom that knowledge is derived.

Protecting vulnerable bodies and respecting the wishes of living subjects was not always standard practice. It is no coincidence that IRBs sprang up in the same decades that civil rights, women’s rights, indigenous rights, and other movements of self-determination came to the fore. Calling archival materials human specimens is outside the bounds of the current conception of our profession, yet respect for cells would have sounded equally absurd just a few years ago.

Setting up ethical review boards would demand that institutions include a voice from the community represented as subjects or creators of materials, correct previously incorrectly described materials, and build an institutional pathway for advocacy for vulnerable populations, such as restricting access to or repatriating culturally sensitive or sacred materials belonging to indigenous peoples. Every IRB must include one or more members with knowledge about and experience working in the community proposed as the research subject. Understanding that humans are represented within collections in very literal and not simply figurative ways shifts the framework of protection from intellectual property law and other patriarchal, capitalist forms of legal rights to rights rooted in social, relational, community-based ethics. This also flips the standard of accountability from a reactive one based on a framework of punishment to one rooted in methodology, personal experience, subject representation, and proactive consent.

There is a worry that putting humanities research through ethical review committees would put the entire field on a toboggan on a slippery slope of censored research, limited scholarly access, and politicized academics. However, this view completely overlooks the fact that research by and about certain groups is censored in practice, that scholarly access has been used as a way to legitimize intrusive, non-consensual research, and that no research, in the humanities as much as the sciences, is truly neutral.

Technically, IRBs have been set up not to protect individuals, but to protect institutions from being sued for infringing on the rights of individuals. Research was so egregiously harmful and one-sided that these systems were set up to institutionalize ethics. Some of the positive effects ethical review committees have, particularly in building trust and partnerships with vulnerable and underrepresented communities, ultimately still benefit the institutions. While IRBs have done work to reduce harm, the question remains as to whether using a tool born of the system can be liberating to those within and outside of it. Considering that a non-institutionalized ethic of care might not be particularly caring toward everyone, is there a role for law - with all its pitfalls of patriarchy and Western authority - which in theory applies universally? 

Accardi (2013) notes, “knowledge produced in the male-dominated culture is traditionally privileged as valid, true, and important, so an emphasis on legitimizing other forms of knowledge, especially the knowledge of oppressed classes, is a feminist act.” [1] The archive as it is commonly conceived and practiced is a Western, patriarchal structure and a colonial site. The dream of the public domain and the prevailing hope that if only we had access to all the knowledge of the world, we would finally understand everything are both Western, patriarchal ideas that fulfill a vision of domination rather than empowerment. Non-Western epistemologies make space for knowledge to live within complex social webs of relationships rather than in repositories, and view knowledge as a responsibility rather than a right.

This acknowledgment of the social aspect of knowledge production challenges archivists to look not just at the materials, but at the human relationships behind their creation and preservation. Ultimately, it is in the relationships within materials - the friend addressed in a letter, the ex-lover grieved in a diary - as well as, importantly, the relationships between archivists and the materials’ custodians and between fellow archivists that we find life. 

If “archivists can enter into relationships of care with the creators of records that transcend time and space,” [2] the living humanity of those creators should also transcend time and space. When Caswell and Cifor (2016) speak of archival creators and subjects as linked with archivists in a web of relationships of care in a framework of radical empathy, they emphasize that “The notion of empathy we are positing assumes that subjects are embodied…This emphasis on empathy takes bodies and the bodily into account. Bodies and care are intimately linked.” [3] Borrowing from Eve Tuck and K. Wayne Yang’s work criticizing “The easy adoption of decolonizing discourse by educational advocacy and scholarship” which “turns decolonization into a metaphor,” [4] a feminist ethic of care is similarly “not an approximation of other experiences of oppression…a swappable term for other things we want to do to improve our societies and our schools.” [5] When we truly animate the two-dimensional and consider the relationships that give life to the materials, we will embrace the challenges and opportunities that come with facing the people in our care.

Notes

[1]  Maria Accardi, Feminist Pedagogy for Library Instruction (Sacramento: Library Juice Press, 2013), 38
[2] Michelle Caswell and Marika Cifor, “From Human Rights to Feminist Ethics: Radical Empathy in the Archives,” Archivaria, 81 (Spring 2016), 34
[3] Caswell and Cifor, “Feminist Ethics,” 31
[4] Tuck, Eve and K. Wayne Yang, “Decolonization Is Not a Metaphor,” Decolonization 1:1 (2012), http://www.decolonization.org/index.php/des/article/view/18630, 1
[5] Tuck and Yang, “Decolonization,” 3

References

Accardi, Maria. Feminist Pedagogy for Library Instruction (Sacramento: Library Juice Press, 2013), 23-69. 

Caswell, Michelle and Marika Cifor, “From Human Rights to Feminist Ethics: Radical Empathy in the Archives,” Archivaria, 81 (Spring 2016): 23-43. 

Tuck, Eve and K. Wayne Yang, “Decolonization Is Not a Metaphor,” Decolonization 1:1 (2012), http://www.decolonization.org/index.php/des/article/view/18630.