AAA Comments on Notice of Proposed Rule Making for IRBs

Post authored by Lise Dobrin (University of Virginia)

 

Below are some excerpts from the 18-page comment submitted by the AAA to the Office of Human Research Protections on January 6, 2016, in response to the proposed changes in the “Common Rule”, the federal regulations that motivate the system of research ethics review that is implemented by IRBs. The AAA comment was authored on the AAA’s behalf by Rena Lederman (Princeton University) and Lise Dobrin (University of Virginia). An overview of the Notice of Proposed Rulemaking (NPRM) and the full text of the AAA’s response can be found here.

 


On the NPRM’s proposal to expand the definition of “human subject” to include even non-identified biospecimens:

The American Anthropological Association is in general accord with the principle of “autonomy” (or “respect for persons”) underlying this NPRM proposal to change the definition of Human Subject. Anthropologists and their study participants have objected to the reduction of biospecimens to “data” (i.e., values detachable from their sources); they have pointed out that blood, tissue samples and the like can come to stand for persons and be invested with specific social, cultural, and ritual values.

 


On the problematic omission of sociocultural anthropology’s signature methods from both the Common Rule and the proposed rule change:

 Our first and most important general comment is that several of the proposed changes will deepen, rather than alleviate, ambiguity. This is especially true with respect to sociocultural anthropologists’ most characteristic research activity – “participant observation” (also referred to as “ethnographic fieldwork”, “fieldwork”, and similar terms) – which finds no place within the existing Common Rule at all. Insofar as the proposed changes likewise make no mention of participant observation, anthropologists and others who employ this approach—along with their IRBs—are left entirely in the dark. This situation promises to keep ethnographic field projects that rely on participant observation in “expedited” or “full board” categories when according to the logic behind the NPRM they should be “exempt” or “excluded”.

[A]nthropologists preparing to undertake “participant observation” do not understand themselves as conducting “interviews”. Instead, they are trained to appreciate that interviewing and participant observation are distinct (indeed methodologically opposed) activities: the former is an investigator-controlled interaction (the researcher asks a more or less predetermined set of questions keyed to his/her relatively well-defined research agenda) while the latter is basically a participant-controlled interaction (the researcher is responsive to his/her hosts’ agendas of activities, topics, and the like). This means that fieldworkers’ honest answers in response to [questions intended to establish exemption] would not enable them to meet the regulatory criteria for the exemption. This runs counter to the spirit of the NPRM proposal as we read it. We therefore ask that if the proposal to exempt low-risk research through interactions is adopted as described in the NPRM, “participant observation” be specifically listed among the activities that count as “low risk” for purposes of the exemption.

 


On the notion of “generalizability” as establishing a need for ethical oversight:

Reference to “generalizability” points to the heart of the problems inhering in the Common Rule definition of “research”. “Generalization” raises distinctive ethical problems within biomedicine as a result of the slippage between a doctor’s commitment to provide individual patients with personal care and the doctor-researcher’s commitment to socially-beneficial generalizing research. But it does not usefully diagnose a need for regulation across the board.

 


On the likelihood and severity of risk not greater than what is “ordinarily encountered in daily life” as a regulatory criterion:

Because researchers engaged in participant observation and ethnographic fieldwork interact with participants in the course of daily life on those persons’ own terms as a matter of methodological principle and because researchers do so without deception as a matter of ethical principle – that is, because they do not remove participants from their daily lives in order to engage in research or otherwise engage in research manipulations – these standard anthropological methods are consistent with the spirit of “minimal risk”, that is, they involve a “probability and magnitude of harm or discomfort” that is not greater that what is “ordinarily encountered in daily life”. Indeed, participant observation and ethnographic fieldwork more nearly approximate daily life than do any of the other activities currently listed on the OHRP expedited list, such as “surveys”, “interviews”, and “focus groups”. For that reason, we favor “excluding” participant observation/ethnographic fieldwork from the Common Rule.

 


On the need to determine confidentiality requirements on a case-by-case basis:

[W]hile anthropologists appreciate the importance of keeping data confidential when appropriate, it is not the case that information (e.g., stories or recorded texts) shared with investigators by participants in anthropological research should always be kept confidential along the lines of protected health information. To the contrary, one important purpose of anthropological research is to document knowledge for future use, whether by members of the community being investigated or by future researchers. The insistence on adherence to any privacy safeguards irrespective of the situation of research (including the wishes of the participants) runs counter to the context-sensitivity required for the ethical conduct of anthropological research, and in fact contradicts the AAA Statement on Ethics, which calls upon anthropologists to balance the protection of research participants and their communities with the careful preservation and judicious dissemination of their research records.

 


On the NPRM proposal to exempt low-risk research from IRB oversight:

We believe that anthropology’s most distinctive method of research, participant observation – if it does not fall completely within categories of “excluded” activity – falls within [the category of activities deemed “exempt”]: it involves the collection of information through open-ended interactions with participants in ways that are, as a matter of methodological principle, not under the researcher’s control but responsive to constraints imposed by study participants in their own daily life contexts. Because this exemption would support anthropologists’ ability to apply their professionally- and experientially-honed ethical judgment in an active, responsive, and situation-specific way as their research unfolds, the AAA supports this proposal, which decreases the burden on researchers to seek administrative review from those who have less knowledge about the risks to participants than they themselves do, while simultaneously diminishing (or at least not increasing) the risks associated with the research.

 


In response to the NPRM proposals about obtaining and documenting informed consent:

Among the proposals made in this section is one that would allow “a waiver of the requirement for a signed consent form if the subjects are members of a distinct cultural group or community for whom signing documents is not the norm” (FR 53977, 54055). The AAA supports this provision enthusiastically. Consent needs to be tailored to the social and cultural context of the research community if it is to be meaningfully informed. Yet despite the diversity of cultural settings in which anthropological work takes place, anthropologists frequently find themselves called upon by their IRBs to document consent in ways that make no sense to their study participants. In such situations signing consent forms offers the participants little in terms of protections, and unnecessarily burdens researchers who are caught between the expectations of their IRBs and the perspectives of their study populations. Moreover, the standard IRB-driven requirement for documentation of consent can interfere with rapport (that is, following local norms of relationship-building), a methodological prerequisite for effective ethnographic fieldwork.

We encourage Common Rule revisions to go even further, and explicitly recognize the need for “emergent” consent in the case of participant observation, where understandings of the research questions, and hence the potential risks and benefits of the research, develop dialogically (in culturally- appropriate encounters, usually by means of conversation) not only for participants but for researchers over the course of their interaction. For this reason, even when it is obtained orally, consent in anthropological fieldwork cannot be construed as an “event”, like listening to a script and agreeing to some or all of its terms.

 


On the awkwardness of continuing review for much anthropological research:

The NPRM proposes to eliminate the requirement of annual continuing reviews for “minimal risk” studies, i.e., those that qualify for expedited review. The NPRM also proposes to eliminate review of such minimal risk research once it has proceeded beyond data “collection” to data “analysis”, unless justification is given for why continuing review is called for. The AAA strongly supports these proposals, which help clarify the application of the Common Rule to anthropological research. It is standard practice for anthropologists to reflect on, analyze, and write about their field research experiences for years and even decades beyond the actual research encounters with study participants. This disciplinary norm makes it difficult or impossible for fieldworkers to identify a point at which their studies have ended.

 


On the category of “vulnerable populations”:

We applaud the NPRM’s proposal to clarify reference to “vulnerable populations” such that the consideration of relevance is specifically vulnerability to coercion. Categorizations of persons into a priori types cannot always be successfully applied across the board and apart from context; indeed, even reference to “children” must take into account local cultural conditions (e.g., the relevant distinction may be ritually initiated vs. uninitiated boys). The Common Rule specification of “vulnerable populations” may make sense in most situations in the U.S., but not in other settings where social categories may differ. Moreover, as is often emphasized by disability advocates, there is no reason to assume that being assigned to a given category of persons—those “physically disabled”, those “economically or educationally disadvantaged”, or any other group—necessarily puts individuals at risk of harm when those individuals engage in any area of life, research included. Indeed, the operative concerns—as the NPRM proposals attempt to acknowledge—are (1) the Belmont principle of Justice which calls for equitable opportunity to participate in research, and (2) the necessity for IRBs “to give consideration to [board] membership expertise” when they evaluate protocols involving study populations with which Americans are not generally familiar (CFR p.53989).

An Intersectional POV On How the Contingent Faculty Market Is Against Our Other Principles in the AAA Code of Ethics

The author of this post wishes to remain anonymous.

This blog discusses the ways in which people of color, and especially women of color first generation PhDs, experience the contingency market differently because of their intersectional identities and how this undermines the discipline’s goals of contributing a diverse body of knowledge under truthful conditions of knowledge production.

 

This blog entry seeks to encourage a long-needed discussion on how our structural participation in the contingency market can be seen as contra to the general AAA Ethics Principles we, as dues-paying members, hold ourselves accountable to. In their March 27th 2015 AAA Ethics blog post “Professional Precarity, Ethics, and Social Justice,” my colleagues and fellow linguistic anthropologists Netta Avineri and Steve Black focused on how the contingency market compromises the final part of the AAA Code of Ethics. Their focus naturally was Principle Seven, “Maintain Respectful and Ethical Professional Relationships.” I want to expand on their important contributions here to foreground how structural conditions of the most marginalized contingent faculty, which I will define below, impacts the other objectives in more indirect but just as equally consequential ways to the profession, the communities we study, and the students and broader society we aim to serve.

 

Before heading into the principles, I want to make a few important caveats that are often not made when this complex issue is discussed. I am not talking about faculty and administrators at all higher education institutions that rely on contingent faculty. Many institutions have actually created and shared best practices through forums like the Delphi Project at the University of Southern California. (Sadly, these practices are still few and far between and still seen as anomalies rather than innovators in higher education.) Moreover, I am not addressing all members of the contingent faculty class. There are contingent faculty members who are post-academics, or scholars who no longer work full-time in any academic position, and retired academics. These two classes often use contingent faculty positions as supplemental income and, at times, even donate their salary back to the institution. Some even say this is who these positions were originally designed for–people who are able to bring ‘real world’ experience to student instruction. Sadly, this minority of contingent faculty is also used by many to rationalize the current inequities in resources, compensation, and more for these positions when in fact we know this is not the majority of those we hire to teach classes.

 

Invoking Kimberle Crenshaw’s (1989) original framing of intersectionality to recognize not all oppression and ethical violations are felt equally, I emphasize that I am writing from the place of lived experience with the most marginalized of contingent faculty in anthropology departments: those part-time PhDs and PhD graduate students not in post-academic careers that are typically women and scholars of color (if not both–see the New Faculty Majority/New Faculty Majority Foundation’s Women in Contingency Project as well as the statistics from the American Federation of Teachers Report). Many times, like myself, they are also first-generation PhDs without adequate financial and cultural/social capital resources, which also includes knowledge of how to use the PhD as cultural/social capital in post-academic careers because they are often unintentionally cut out from other networks due to ‘pattern matching.’ They return to their home communities after having given a bulk of their lives to academia with their hopes dashed of contributing to knowledge production not only for themselves but also for the betterment of the profession and their communities. Moreover, they occupy a unique place in these discussions. Within their ‘own’ native professional circles that seek to promote ethnic, sexual, and gender diversity in the discipline, these scholars find that, when they make moves to speak of contingent issues, it is often construed as undermining or detracting from the ‘more important’ agendas of anti-racism work underway in academia. What is overlooked is that this is work that only some privileged tenure/tenure track academics get to fight. At the same time, to speak of intersectional identities and their invisibility in the contingent faculty movement risks them being called race-mongers and seen as undermining the labor movement. They are, in essence, in limbo and often relegated as an exception to be dealt with later on both sides.

 

When they face structural discrimination, one cannot tell if it is because of their adjunct status or their ethnic and gender status, if not both. Thus, as Crenshaw reminds us, when we help the most disenfranchised–who often are the most difficult to design new practices of inclusion for because of their intersectional status–everyone gains. So this is the position from which this is addressed, especially since these intersectional beings tend be silenced both in anthropology and in the contingent faculty movement through various micro-aggressions that often reproduce their dual stigmatization. To continue to speak of contingent faculty in general, non-intersectional terms contributes dangerously to the assumption that academic and socioeconomic disenfranchisement is equally felt the same by all and has the same consequences when it does not. Thus, my remarks below come from my position as an intersectional contingent faculty involved in both circles that, in my perspective, have not done nearly enough in creating alliances in the contingent movement due to ‘divide and conquer’ mentalities that pervade academic structural practices.

 

Principle #1: Do No Harm (You Can’t Hurt the Anthropologist and Not Hurt the Field Communities)

In anthropology, interconnectedness is not just a fancy abstract concept–it is the crux of how we do our work. This is echoed in many sentiments that locate anthropological enterprises as embodied and inscribed onto bodies of researchers. When the anthropologist is embedded in and socialized to be dependent on working conditions that do not allow them to disseminate their findings, we hurt field communities by decreasing the possibility of their stories and concepts being told. Every time a contingent faculty person is denied adequate living wages, affordable health care, has health problems that are exacerbated by working conditions that dehumanize them, discriminated against implicitly in tenure-track job searches because they are contingent, and so on, writing and dissemination become distant if not impossible goals. Conference papers do not get written, much less presented live at conferences due to employer-imposed travel restrictions, and journal articles do not get drafted. In short, research findings that could very well do more good than harm to communities–especially critical perspectives from underrepresented communities that push forward and challenge paradigms rather than stagnate knowledge production–end up on the cutting room floor. The (ab)use of the contingent market places scholars, especially persons of color and women, in a position that unintentionally causes harm through silence. Thus, when we speak of doing no harm, it might be best for the AAA to move away from seeing it as an individual, interpersonal aspect and understand it is a structural aspect, like sociologist Eduardo Bonilla-Silva contends about race no longer needing ‘racists’ because it is in the structures we live and reproduce everyday. In this way, we can see that our daily reproduction of the contingent market structure through everyday practice, whereby faculty are not supported to disseminate their research but solely ‘teach,’ creates harm to many underserved field communities.

 

Principle #2: Be Open and Honest Regarding Your Work (Let’s Get Real About Working Conditions That Produce the Work across All Stages)

When this principle is invoked, it tends to focus primarily again at the level of the anthropologist at an interpersonal, micro arena. In contrast, it does not usually concern the honesty of the ways in which academic labor is often not based on meritocracy but on a labor system that rationalizes disenfranchisement in the name of a good cause. We rarely ever disclose that the production of our work by tenured/tenure track faculty relies on the use of contingent faculty who are typically underpaid. For instance, when the money to hire contingent faculty is officially written into research grants and the same contingent faculty is not provided adequate pay, this remains hidden from all of our accounts of how the work was produced. How many times do we see contingent faculty thanked by scholars in books and articles, those faculty who have used the time and skills of a fellow anthropologist at a discount cost? How many times have many said faculty come to observe their contingent faculty counterparts and write letters of recommendation for future teaching and research opportunities? In essence, maybe it should not even be about sponsors but about stakeholders who also help get much anthropological scholarship done and rarely are acknowledged because of their invisible labor, a term coined by one of my colleagues. I wonder, if we were to put this practice into action, how many of us and the general public would see the ethnographic enterprise much differently beyond its claims of deep human understanding when we learn at what cost these understandings are produced.

 

Principle #3: Obtain Informed Consent and Necessary Permissions (I Hereby Consent to Let You Tell My Story at the Expense of Another Human Being’s Well-Being)

In conventional musings on consent, this discussion typically focuses on the consent for prospective research participants to interact with us for our own research to proceed. This often gets to how much to tell them so that we can enter into and sustain research in these communities so as not to impact the findings. What if we were to tell our participants (especially those in vulnerable communities of color) that, in the production of this work, this may (and probably will) involve the use and abuse of another vulnerable population: contingent faculty (including and most often disproportionately women and scholars of color), who will be underpaid and underserved when many of us take our sabbaticals to turn our dissertation findings into book-length projects. If our participants knew about this (just as people rallied to tell others of the harmful side effects of other products we consume in the US), how many would actually agree to the way we produce work in many top institutions? By not telling them each and every time that we make use of the contingency market for the production and dissemination of some stories and not others, do we ultimately deceive them about our own complicity and participation in structures that allow for the simultaneous reproduction of knowledge and socioeconomic and racial/ethnic inequity in academia?

 

Principle #4: Weigh Competing Ethical Obligations Due Collaborators and Affected Parties (And Yes, Contingent Faculty Are Affected Parties of Research)

To think of contingent faculty in the broader research game must include a key discussion of how they are affected parties in research, as listed in the AAA Ethics Statement. Contingent faculty are professional colleagues, since they are often anthropologists with PhDs, and also stakeholders in the research process. By stakeholders, I mean that they are brought in to teach courses when a faculty member at a research institution needs to go on leave to delve further into research or, in some cases, cheaply fill a retirement gap so other faculty do not have to compromise their own productivity. By releasing colleagues from their teaching commitments, contingent faculty are affected parties because they contribute to the production of knowledge, many times at the expense of their own and their field communities’ well-being due to contingent working conditions. Yet our ethical concerns around equity and just treatment toward contingent faculty are often ignored or not given strong thought. For instance, how many of us actually ask ourselves what our ethical obligations are to our contingent colleagues who support us with their invisible and marginalized labor? They are not just teaching, but they are also teaching in support of someone else’s research, if not more, for the structure permits this to be so.

 

Concluding Thoughts

This blog has aimed to show how, as we anthropologists continue to engage in the contingent market, we enter into some dangerously murky ethical waters. I often think to myself if this were any other industry happening in our own fieldsites, we would waste no time passing resolutions and creating actionable steps. And yet, we find ourselves often times dangerously silent because, for many of us, we reap many material and personal gains through this structurally-licensed disenfranchisement. This is often because, even in academia, there is a greater incentive to turn activism outward rather than engage in a reflexive, inwardly-turned academic activism. In this light, I encourage us all to act on behalf of the contingent faculty movement not because it is the ‘right thing to do,’ but to show that we as anthropologists can actually live up to our Code of Ethics in order to create quality learning and research conditions for our students and ourselves. As Crenshaw reminds us, when the most marginalized win, we all win. When we short-change even one group, we short-change all of our students and ourselves. So I ask us to be anthropologists not just in name only or in research, but also in academic activism turned inward. Our undergraduates, graduate advisees, colleagues, and field participants from the world over are depending on us. Let us not be slow to act but to actually use the academic freedom many of us possess to leave a more just and sustainable academic footprint that doesn’t come at the expense of harmful silencing of communities and research. It is time for us to use this critical discussion of our ethics as a springboard to create new practices around contingent faculty that support, rather than contradict, our professional ethical stances.

 

Do androids dream of ethical leaps?

 

by Alison Atkin and Dave Errickson

 

Is it okay to share photos of skeletons on social media? How do we ensure osteological methods remain reliable as they become increasingly digital? Do we need to regulate the availability of digital reproductions of human remains?

 

Individuals who work with human remains, from archaeologists to museum curators, have long been aware of the many ethical considerations that come with their work. In order to assist them in making decisions in their daily work, whether performing skeletal analysis or developing a new public exhibition, numerous professional bodies (e.g. BABAO, AAPA) have developed guidelines and policies to ensure best practice.

 

However, due to the evolving and expanding disciplines it has become increasingly common to find yourself faced with a situation that is not covered in these documents; with the increased adoption of digital techniques, a gap has developed through which many digital issues have been falling. In response to these situations, many researchers have attempted to interpret and apply current standard guidelines for physical remains to digital media (e.g. blogs, social media, online videos, 3D documentation and printing). Furthermore, they’ve also reached out to peers and colleagues for advice, which has lead onto wider conversations about the lack of guidance in this digital age of osteology.

 

There are a large number of people who have the same issues, the same questions, and the same conversations. This realisation lead to the matter being raised at the annual conference for the British Association for Biological Anthropology and Osteoarchaeology in September 2015 by Alison Atkin in a presentation titled, ‘Digging the Digital Dead: Discussing Best Practice for Future(istic) Osteoarchaeology’. The aim of the presentation was to gather all of the momentum into one effort and establish a working group. With the support of conference delegates (including those attending digitally as well) we (Atkin and Errickson) have created the first step to address these issues by starting a mailing-list: DIGITALOSTEO

 

The current aim of the mailing-list is to gather common themes, ahead of a workshop, so that we can better advise amendments to existing guidelines and policies. In two weeks the group has gathered support with more than 75 members joining from a range of specialist disciplines and has thus so far generated discussion on a range of perspectives through shared examples. In addition the working group has started to collect together a range of concerns pertaining to ethical considerations in digital osteology.
While the working group is in its early stages, it is clear that as a discipline we have seen the need to address the ethical considerations of our digital work. We as a group would urge and welcome others to join us in this process (no matter what your osteological context is), to share your experiences and help us consider your views and concerns in this early process.