What is “personal” about personal experience? A call to reflexivity for all

Introduction

In their article, Nelson et al. (Nelson, n.d.) raise concerns regarding the “paradox of experience” as it relates to the practice of bioethics. They argue that while experience provides individuals with intimate knowledge of events or states through which they have lived, it simultaneously creates the possibility for bias in the communication of that knowledge. The authors contend that personal experience is therefore due unique caution when presented as evidence in bioethical arguments. We agree with many of the concerns raised by this analysis. We also disagree with several elements, some of which we will not have the opportunity to address here.

In this Commentary, we focus specifically on the rhetoric of “personal experience” on which the authors rely. We contend that their argument rests on an undertheorized conceptualization of personal experience, significantly weakening their claims. Though this topic has been taken up by a range of literatures relevant to bioethics – including philosophy, anthropology, history, and psychology – the authors provide no clear definition of this central component of their argument. As a result, their claims erroneously imply that a bioethics (and bioethicists) without such personal experience represents a proverbial tabula rasa, relatively free from bias. In place of such idealized dispassion, we encourage all bioethics – regardless of their specific histories of “personal experience” – to cultivate a practice of critical reflexivity.

What is “personal” about personal experience?

As noted above, the complex processes through which experience shapes how individuals come to understand themselves and their world has been extensively theorized in multiple relevant disciplines. While a full review of this literature is beyond the scope of this Commentary, here we concern ourselves with the related but distinct concepts of tacit knowledge, intimacy, identity, and bias.

As Nelson et al. imply, one product of personal experience is tacit knowledge. This form of knowledge consists of propositions about the world that are unsystematized and untheorized. As such, tacit knowledge is distinguishable as a category from knowledge that is encoded in the conventionalized language of a given community – for example, the language of clinical medicine – and thereby scrutinizable. It is through processes of sensitization and reflection on the part of those who obtain tacit knowledge that it is potentially transformed through a system of symbols into explicit and sharable knowledge (Polanyi 2009).

Nelson et al. take issue with such forms of knowledge production due to what they see as their outsized potential for bias. However, it is not only through personal experience – per Nelson et al.’s conceptualization – that such tacit knowledge is produced. On the contrary, individuals develop tacit knowledge through all forms of subjective experience(Biehl, Good, and Kleinman 2007), a broader term from phenomenological anthropology that we use to refer to process through which one’s experience and associated tacit knowledge are shaped by the situated and relational entwining of the individual and their worlds – personal, professional, or otherwise. As such, the development of tacit knowledge regarding a particular topic – for example, a rare disease – can result not only from one’s identity as a patient living with a rare disease (though identity may arise from personal experience), but from intimacy, or close, repeated, in-depth encounters with a given topic or event.

Such tacit knowledge is commonplace in many (arguably all) academic disciplines, including clinical medicine, anthropology, and bioethics itself – and, indeed, may lead to bias: A clinician develops a tendency to treat fever in all patients after losing one to sepsis following delayed intervention, despite empirical evidence that most fevers are not life-threatening. A bioethicist whose training has emphasized the importance of autonomy focuses primarily on the tools of informed consent as opposed to community engagement in her examination of research ethics. Indeed, even our raising of these concerns stems from our own subjective experience – in this case, the experience of anthropological training and research. Our experience has instilled in us unique perspectives, values, and attitudes toward questions of subjectivity and epistemology, as well as deep intimacy with our research subjects through embedded ethnography, in turn shaping our views.

One can clearly gain critical insights by living through specific events and states for a variety of reasons. However, while clinicians, anthropologists, and bioethicists do not precisely share the same subjective experience of their patients, informants, or research participants (Marcus and Fischer 1999), they still gain tacit knowledge from their intimate and sustained encounters with these populations and their worlds. All are able to make claims to unique insights unavailable to individuals who have not participated in these communities and lifeways with such intimacy. As such, the concept of personal experience on which Nelson et al.’s proposed paradox relies – and the risks of bias it generates – can only nominally be separated from other forms of expertise and evidence-making, such as years of clinical practice or in-depth ethnography. If tacit knowledge has outsized potential for bias, as Nelson and colleagues argue, then anyone with extensive subjective experience with a topic or community – and not only those who identify as a member of that community – are at risk of bias.

The authors’ “grain of salt norm” therefore relies on a conflation of group membership (identity) with intimacy and tacit knowledge in suggesting that persuasion bias exists uniquely for members of the group about which knowledge is being produced. However, linguistic anthropology has demonstrated that even usual communicative acts are acts of persuasion, not just those propositions uttered by nameable stakeholders. In fact, speech that was traditionally taken as categorically descriptive or “constative” (Austin 1962) has been shown in reality to be crafted purposefully and poetically in order to have specific effects on the world (e.g., Caton 1986). That is to say, there are no “dispassionate” or “disinterested parties” in knowledge production, regardless of in-group status. This clearly does not negate warranted skepticism when problematic bias is identified, but rather demonstrates that such bias is not distinctive of those with personal or otherwise intimate experience – or even those with socially authorized claims to group membership.

All knowledge producers have personal stakes in the persuasiveness of their propositions. However, when Nelson et al. state that “it is clear that bioethicists must do a better job of listening to the voices of stakeholders,” they suggest that bioethicists themselves are free from stakes in a given debate. To the contrary, all bioethicists – no matter their identities and identifications – are subject to bias stemming from their own personal experiences and/or the historical context in which the work is done. For instance, a scholar raised and trained in Western, bourgeois institutions will necessarily be influenced by the taken-for-granted perspectives of those communities. While individuals who claim certain forms of subjective experience – such as living with a disability – may have unique tacit knowledge, the cautions Nelson et al. raise regarding bias are not unique to individuals with such (often marginalized) identities.

A call to reflexivity for all

The need, therefore, is not to take certain types of personal experience with a “grain of salt,” as Nelson et al. suggest, but to cultivate an expectation of reflexivity among all bioethicists. Reflexivity – a self-critical examination of one’s own positionality – is necessary to attend both judiciously and compassionately to first-person testimony and its iterative inscriptions in published works. A commitment to reflexivity recognizes that all acts of knowledge production are partial and self-interested – from the intimate, tacit knowledge gained from “being there” as a patient or an anthropologist, to the implicit or explicit advocacy claims of a caring clinician or the expert testimony of a bioethicist. Moreover, reflexivity can allow us to see beyond the potential for individual biases to the biases and limitations imposed by the structural conditions under which such intellectual labor is carried out, those “historical processes that […] position subjects and produce their experiences” as members of a specific class (Scott 1991).

Further, Nelson et al. also recognize cases in which bioethicists themselves identify as members of a community that is simultaneously their topic of study. The authors acknowledge that having personal experience of a particular set of circumstances can provide these scholars with unique insights in their work. We agree wholeheartedly on this point. We also agree that any individuals’ subjective experiences – broadly construed – almost certainly lead them to think differently about a problem in a way that could beget biased thoughts and actions. However, we reject the authors’ notion that there is a certain type of “personal experience” – such as being disabled, a patient with a rare disease, or one who identifies as a member of a minoritized social group – that makes individuals uniquely prone to bias any more than an able-bodied, male bioethicist with no affected children. Furthermore, such a proposition implies that bioethics was historically unmotivated by personal experience and its attendant biases, in direct contradistinction to the calls for increased diversity within the bioethics workforce of today. All bioethicists have personal experiences and concomitant biases, and thus, we all would be better served by a critical reflexivity in our scholarship.