Journal of Bioethical Inquiry, Volume 14, Issue 1 (March 2017)
Symposium: Public Trust in Expert Knowledge
Guest Editors: Silvia Camporesi, Maria Vaccarella, and Mark Davis
Image: FreeImages.com/Berkeley Robinson
Prestidigitation vs. Public Trust: Or How We Can Learn to Change the Conversation and Prevent Powers From “Organizing the Discontent”
Leigh E. Rich
Bernadette Richards and Michaela E. Okninski
Symposium: Public Trust in Expert Knowledge
Silvia Camporesi, Maria Vaccarella, and Mark Davis
“Public Trust in Expert Knowledge: Narrative, Ethics, and Engagement” examines the social, cultural, and ethical ramifications of changing public trust in the expert biomedical knowledge systems of emergent and complex global societies. This symposium was conceived as an interdisciplinary project, drawing on bioethics, the social sciences, and the medical humanities. We settled on public trust as a topic for our work together because its problematization cuts across our fields and substantive research interests. For us, trust is simultaneously a matter of ethics, social relations, and the cultural organization of meaning. We share a commitment to narrative inquiry across our fields of expertise in the bioethics of transformative health technologies, public communications on health threats, and narrative medicine. The contributions to this symposium have applied, in different ways and with different effects, this interdisciplinary mode of inquiry, supplying new reflections on public trust, expertise, and biomedical knowledge.
Daniel Z. Buchman, Anita Ho, and Daniel S. Goldberg
Trust is central to the therapeutic relationship, but the epistemic asymmetries between the expert healthcare provider and the patient make the patient, the trustor, vulnerable to the provider, the trustee. The narratives of pain sufferers provide helpful insights into the experience of pain at the juncture of trust, expert knowledge, and the therapeutic relationship. While stories of pain sufferers having their testimonies dismissed are well documented, pain sufferers continue to experience their testimonies as being epistemically downgraded. This kind of epistemic injustice has received limited treatment in bioethics. In this paper, we examine how a climate of distrust in pain management may facilitate what Fricker calls epistemic injustice. We critically interrogate the processes through which pain sufferers are vulnerable to specific kinds of epistemic injustice, such as testimonial injustice. We also examine how healthcare institutions and practices privilege some kinds of evidence and ways of knowing while excluding certain patient testimonies from epistemic consideration. We argue that providers ought to avoid epistemic injustice in pain management by striving toward epistemic humility. Epistemic humility, as a form of epistemic justice, may be the kind disposition required to correct the harmful prejudices that may arise through testimonial exchange in chronic pain management.
The Moral of the Tale: Stories, Trust, and Public Engagement with Clinical Ethics via Radio and Theatre
Trust is frequently discussed with reference to the professional–patient relationship. However, trust is less explored in relation to the ways in which understanding of, and responses to, questions of ethics are discussed by both the “public” and “experts.” Public engagement activity in healthcare ethics may invoke “trust” in analysing a moral question or problem but less frequently conceives of trust as integral to “public engagement” itself. This paper explores the relationship between trust and the ways in which questions of healthcare ethics are identified and negotiated by both “experts” and the public. Drawing on two examples from the author’s “public engagement” work—a radio programme for the British Broadcasting Corporation and work with a playwright and theatre—the paper interrogates the ways in which “public engagement” is often characterized. The author argues that the common approach to public engagement in questions of ethics is unhelpfully constrained by a systemic disposition which continues to privilege the professional or expert voice at the expense of meaningful exchange and dialogue. By creating space for novel interactions between the “expert” and the “public,” authentic engagement is achieved that enables not only the participants to flourish but also contributes to trust itself.
Jennifer Edwell and Jordynn Jack
In this article, we investigate the role of scientific and patient narratives on perceptions of the medical debate around gestational diabetes (GDM) testing. Among medical scientists, we show that the narrative surrounding GDM testing affirms that future research and data will lead to medical consensus. We call this narrative trajectory the “deferred quest.” For patients, however, diagnosis and their subsequent discovery that biomedicine does not speak in one voice ruptures their trust in medical authority. This new distrust creates space for patients to develop a Frankian quest narrative where they become the protagonist in their story. Additionally, across these different narratives, we observe how character is constructed and employed to negotiate trust. We conclude that healthcare providers should assess the narrative trajectory adopted by patients after diagnosis. Also, we suggest that providers acknowledge the lack of medical consensus to their patients. This veracity would foster women’s sense of trust in their provider as well as allow women to be active interlocutors in a debate that ultimately plays out in their deliberation about their body, pregnancy, and risk.
Katie Attwell, Julie Leask, Samantha B. Meyer, Philippa Rokkas, and Paul Ward
In attempting to provide protection to individuals and communities, childhood immunization has benefits that far outweigh disease risks. However, some parents decide not to immunize their children with some or all vaccines for reasons including lack of trust in governments, health professionals, and vaccine manufacturers. This article employs a theoretical analysis of trust and distrust to explore how twenty-seven parents with a history of vaccine rejection in two Australian cities view the expert systems central to vaccination policy and practice. Our data show how perceptions of the profit motive generate distrust in the expert systems pertaining to vaccination. Our participants perceived that pharmaceutical companies had a pernicious influence over the systems driving vaccination: research, health professionals, and government. Accordingly, they saw vaccine recommendations in conflict with the interests of their child and “the system” underscored by malign intent, even if individual representatives of this system were not equally tainted. This perspective was common to parents who declined all vaccines and those who accepted some. We regard the differences between these parents—and indeed the differences between vaccine decliners and those whose Western medical epistemology informs reflexive trust—as arising from the internalization of countering views, which facilitates nuance.
Donor Conception and “Passing,” or; Why Australian Parents of Donor-Conceived Children Want Donors Who Look Like Them
This article explores the processes through which Australian recipients select unknown donors for use in assisted reproductive technologies and speculates on how those processes may affect the future life of the donor-conceived person. I will suggest that trust is an integral part of the exchange between donors, recipients, and gamete agencies in donor conception and heavily informs concepts of relatedness, race, ethnicity, kinship, class, and visibility. The decision to be transparent (or not) about a child’s genetic parentage affects recipient parents’ choices of donor, about who is allowed to “know” children’s genetic backgrounds, and how important it is to be able to “pass” as an unassisted conception. In this way, recipients must trust the process, institutions, and individuals involved in their treatment, as well as place trust in the future they imagine for their child. The current market for donor gametes reproduces normative conceptions of the nuclear family, kinship, and relatedness by facilitating “matching” donors to recipients by phenotype and cultural affinities. Recipient parents who choose not to prioritize “matching,” and actively disclose the process of children’s conceptions, may embark on a project of queering heteronormative family structures and place great trust in both their own children and changing social attitudes to reduce stigma and generate acceptance for non-traditional families.
The debate around the ethics of homeopathy in recent issues of the journal has been approached as a binary question; is homeopathy ethical or not? This paper suggests that this is an unhelpful question and instead discusses a framework to establish the extent to which the dominant (medical) culture should tolerate non-dominant health practices such as homeopathy. This requires a sophisticated understanding of the placebo effect, a critical evaluation of what evidence is available, a consideration of the harm that the non-dominant practice might cause, and a consideration of how this might be affected by the culture of the patient. This is presented as a matter of cultural competence. At a clinical level clinicians need to respect the values and beliefs of their patients and communicate with all the practitioners involved in a patient’s care. At a societal level there are a number of factors to be considered when a community decides which practices to tolerate and to what extent.
Anke I. Bouzenita
This paper gives insight into the Islamic bioethical discussion on harvesting and using human embryonic (hESC) and adult stem cells. It describes some of the Islamic legal mechanisms involved in the bioethical discourse among Muslims. As the contemporary Islamic bioethical discourse is very diverse, the paper focuses on the critical discussion of related resolutions of the Saudi-based Islamic Fiqh Academy due to the esteem in which the IFA is held in the Islamic world and the pertinence of their rulings on this issue. This study discusses the different sources of human adult and embryonic stem cells and their use from an Islamic perspective, while questioning some directions the Islamic bioethical discourse has taken. The paper invites interested parties to deliberate the use of some of the legal means resorted to in the ongoing Islamic bioethical discourse.
Sigrid Bosteels, Michel Vandenbroeck, and Geert Van Hove
New-born screening programs for congenital disorders and chronic disease are expanding worldwide and children “at risk” are identified by nationwide tracking systems at the earliest possible stage. These practices are never neutral and raise important social and ethical questions. An emergent concern is that a reflexive professionalism should interrogate the ever earlier interference in children’s lives. The Flemish community of Belgium was among the first to generalize the screening for hearing loss in young children and is an interesting case to study the public justification of early interventions for families with deaf children. This article uses a critical lens to study the archive of the government child healthcare organization in Flanders in order to uncover underlying constructions of childhood, deafness, and preventive health. We focus on two interrelated themes. The first is the notion of exclusion of the human factor through the mediation of technology. The second is the idea of deafness as endangering a healthy development, an impairment that can nevertheless be treated if detected early enough. It is argued that, since deafness cannot be viewed as a life-threatening condition, the public interest which is implicitly defended is not the rescue of deaf children rather the exclusion of otherness.
Claudine Clucas and Lindsay St. Claire
Respectfulness is demanded of doctors and predicts more positive patient health-related outcomes, but research is scarce on ways to promote it. This study explores two ways to conceptualize unconditional respect from medical students, defined as respect paid to people on the basis of their humanity, in order to inform strategies to increase it. Unconditional respect conceptualized as an attitude suggests that unconditional respect and conditional respect are additive, whereas unconditional respect conceptualized as a personality trait suggests that people who are high on unconditional respect afford equal respect to all humans regardless of their merits. One hundred and eighty-one medical students completed an unconditional respect measure then read a description of a respect-worthy or a non-respect-worthy man and indicated their respect towards him. The study found a main effect for unconditional respect and a main effect for target respect-worthiness but no interaction between the two when respect paid to the target was assessed, supporting the attitude-based conceptualization. This suggests that unconditional respect can be increased through relevant interventions aimed at increasing the relative salience to doctors of the human worth of individuals. Interventions to increase unconditional respect are discussed.
Serena Purdy, Miles Little, Christopher Mayes, and Wendy Lipworth
The pharmaceutical industry plays an increasingly dominant role in healthcare, raising concerns about “conflicts of interest” (COI) on the part of the medical professionals who interact with the industry. However, there is considerable disagreement over the extent to which COI is a problem and how it should be managed. Participants in debates about COI have become entrenched in their views, which is both unproductive and deeply confusing for the majority of medical professionals trying to work in an increasingly commercialized environment. We used a modified meta-narrative review method to analyse debates about COI in the academic and grey literature. We found two Discourse Models: The Critical Discourse Model sees COI in health and biomedicine as a major problem that both can and should be addressed, while the Defensive Discourse Model argues that current efforts to control COIs are at best unnecessary and at worst harmful. Each model is underpinned by profoundly differing views about how society should be organized—in particular whether market forces should be encouraged or curtailed—and how the dangers associated with market forces should be managed. In order to make any headway, academics and policymakers must recognize that these debates are underpinned by profoundly differing worldviews.
Thomas Blikshavn, Tonje Lossius Husum, and Morten Magelssen
Recently, several authors have argued that assisted dying may be ethically appropriate when requested by a person who suffers from serious depression unresponsive to treatment. We here present four arguments to the contrary. First, the arguments made by proponents of assisted dying rely on notions of “treatment-resistant depression” that are problematic. Second, an individual patient suffering from depression may not be justified in believing that chances of recovery are minimal. Third, the therapeutic significance of hope must be acknowledged; when mental healthcare opens up the door to admitting hopelessness, there is a danger of a self-fulfilling prophecy. Finally, proponents of assisted dying in mental healthcare overlook the dangers posed to mental-health services by the institutionalization of assisted dying.