Alleviating Epistemic Injustice with Strategies from “Science and Values”

This post by Kevin Elliott unpacks the value disagreements that lie at the heart of many epistemic injustices in health care and policy

One of the reasons that epistemic injustice is challenging to tackle in medical contexts is that it can be difficult to decide how to handle situations where non-specialists challenge the views of the mainstream medical community. In some cases, non-specialists may have very important insights, whereas in other cases, they may be guided by misinformation. It’s understandable that medical experts want to resist misinformation, but how can they tell the difference between the two cases?

In an article published recently in Topoi, I argued that recent scholarship in the philosophy of science could help with tackling this challenge. Philosophers of science working on the topic of “science and values” have been exploring the wide array of value-laden choices that scientists make in the course of their research. These choices are value-laden in the sense that they have consequences for society, but they can’t be settled just by appealing to evidence and logic. When non-specialists disagree with medical experts because they are handling these sorts of value-laden choices differently, it suggests that the non-specialists’ perspectives should be taken seriously and explored further. 

Consider three important kinds of value-laden choices: (1) research questions and framing; (2) background assumptions; and (3) standards of evidence. First, non-specialists might approach problems differently from the mainstream medical community because they are asking different questions. For example, Maya Goldenberg contends that most public health experts who make claims about vaccine safety are focused primarily on their overall costs and benefits for society as a whole. She argues that some parents are unconvinced by the experts’ assurances of safety because they are worried that particular vaccines might pose significant risks to their specific children based on their unique characteristics. The parents might accept that the overall costs and benefits of vaccines are favorable for society as a whole, but they might doubt that the experts have adequately studied the risks of vaccines in all sub-populations.

Second, non-specialists might draw different conclusions than specialists because they adopt different background assumptions. For example, sociologist Gwen Ottinger  describes how communities living near industrial facilities in Louisiana have struggled to convince regulators to take their concerns about air pollution seriously. This is partly because of a difference in background assumptions: according to Ottinger, the regulators assume that they should focus on average pollution levels over an extended period of time (say, 24 hours or more), whereas community members argue that they sometimes experience lasting health effects from short-term spikes in pollution over much shorter periods of time.

Third, specialists and non-specialists might disagree because they demand different amounts or kinds of evidence. For example, sociologist Steven Epstein points out that many AIDS activists criticized the U.S. Food and Drug Administration (FDA) in the 1980s and 1990s for being too slow to approve new drugs. The activists felt that the FDA demanded too much evidence before declaring drugs safe and effective, especially considering that AIDS patients were willing to take risks because they were likely to die otherwise.

When non-specialists make these kinds of choices differently from medical experts, it does not automatically mean that the non-specialists are correct, of course. For example, vaccine-hesitant parents might be asking a question that has already been addressed. For instance, experts may have already assessed the risks to children just like theirs and found them to be insignificant. Or the background assumptions accepted by non-specialists might be highly implausible compared to the background assumptions accepted by the mainstream medical community.

Nonetheless, even in cases where non-specialists make implausible choices, clarifying these differing choices can still foster greater understanding and richer dialogues between medical professionals and non-specialists. By clarifying these choices, philosophers of science can help non-specialists communicate more effectively about why they disagree with professionals, and they can help professionals interpret the perspectives of non-specialists in more sympathetic ways. In some cases, medical professionals might even change their minds. For example, AIDS activists ultimately convinced the FDA to adopt an expedited approval process for some drugs, and they altered the ways some clinical trials were designed.

Admittedly, not all cases will turn out as well as the AIDS case. There will be some cases where those who question mainstream medical views are simply misinformed or operating in bad faith. But in order to promote a medical system that combats epistemic injustice, we need to explore ways to promote dialogue and mutual understanding in the face of disagreement. The philosophy of science can help with this task.

Note: This post is adapted from a post written for the blog of the American Philosophical Association, “Threading the Needle: Can We Respect Local Knowledge While Resisting Misinformation?”

Author bio

Kevin Elliott is a Red Cedar Distinguished Professor in Lyman Briggs College, the Department of Fisheries and Wildlife, and the Department of Philosophy at Michigan State University. His research focuses on the philosophy of science and practical ethics, with an emphasis on the roles that ethical and social values play in scientific research, particularly in the environmental health sciences. His books include Values in Science (Cambridge University Press, 2022) and A Tapestry of Values: An Introduction to Values in Science (Oxford University Press, 2017).

ADHD, Attachment Theory and Epistemic Injustice

In this week's post, Bozena Zoric summarises the argument of her recently published book ADHD, Attachment Theory and Epistemic Injustice

When I first started working as an NHS Consultant Paediatrician 30 years ago, I quickly realised that the mothers of children with ADHD that I met faced a serious problem. Their efforts to share information regarding their children's health and development were often misinterpreted because some professionals had negative stereotypes about these mothers. My impression of the mothers was that they were caring women wanting help for their children who were struggling at school. These children had already seen professionals in Child and Adolescent Mental Health Services (CAMHS)  teams. The issues children had were hyperactivity, problems concentrating, impulsivity, and some also had behavioural difficulties. These are all features of ADHD.

The diagnosis given by CAMHS was one of insecure attachment. I realised that children had ADHD, which is a developmental problem. The mothers were blamed unjustly for causing ADHD symptoms through insecure attachment.

Twenty years after I first encountered mother blame in ADHD diagnosis, I embarked on a scholarly journey to review how attachment theory relates to ADHD and appraise the evidence for this injustice towards mothers. I realised that this injustice continues in many different ways to this day.

The origins of attachment theory

Attachment theory originated in the UK in the 1950’s and 60’s. It was described by the child psychiatrist John Bowly, who initially used it as a diagnostic and therapeutic framework for emotionally disturbed children, but it eventually evolved into a theory about personality development. Bowlby said that attachment is an ‘innate process which, in an adequate rearing environment, leads to a stable sense of attachment security’. Attachment security depends on attunement and responsive interaction of a primary carer (in Bowlby’s view, a mother) toward a child, especially in emotional contexts. Sensitive attunement then fosters healthy personality development and provides a blueprint for future relationships.

Bowlby’s ideas about the emotional development of children and personality formation were widely followed in UK psychiatry. Bowlby believed that mothers must be re-educated to ensure the successful treatment of children with developmental and mental health issues. He pioneered family guidance clinics at the Tavistock Clinic in 1946, an institution that remains influential to this day. Bowlby’s followers, such as Alan Sroufe, a well-known attachment researcher, describe a child suffering with poor attachment as ‘a fidgety, impulsive child with poor concentration’.

However, there was and continues to be little evidence that attachment style was related to ADHD. A recent systematic research review by Jean-Francois Wylock and colleagues found no evidence of an association between attachment style and developing ADHD. Other factors, such as associated conditions, cognitive difficulties or contextual factors, were more relevant. They explored this further in an original study, which found that the behaviour and executive functioning of the children influence attachment rather than causing their ADHD symptoms.

 

ADHD and attachment theory in mental healthcare today

Nevertheless, the injustice towards mothers of children with ADHD continues. It is an example of epistemic injustice as professionals dismiss mothers’ perspectives and underestimate their capacity to produce and share knowledge. Having a child with ADHD symptoms, behavioural issues and educational challenges leads to conscious or unconscious prejudice towards them about how emotionally attuned they were to their children.

My conversations with mothers and family members who have been the target of this illustrate the profound self-blame and guilt this can cause.

For example, one mother told me of what it was like after her 10-year-old son was diagnosed with ADHD: ‘it was all my fault and my husband works quite long hours and if there is something wrong with the children it must be me’

Attachment difficulties may not be overtly mistaken for ADHD as often as they were 30 years ago but the parenting courses mothers are expected to attend even before their children are assessed for ADHD are often based on attachment theory, continuing to imply mothers’ blame even though  it is the educational institutions that should change their attitude to children with ADHD and be more supportive of their needs.

A mother of an adopted boy with ADHD, who was presumed to have attachment difficulties and was subsequently diagnosed with autism as well, told me:

I was brainwashed in thinking I need better parenting skills and kept going on parenting courses because I was told Bobby had attachment difficulties [as well as ADHD]. I blamed myself, and I felt blamed and I also blamed his biological parents. But I now know that he has got two genetically determined conditions as both ADHD and autism are in his biological family.

This needs to stop. Blame needs to be replaced by understanding children’s needs, celebration of neurodiversity and support for children with ADHD and their families. Valuing a difference rather than having a deficit and a disorder perspective will lead to a more positive experience of ADHD for individuals and society as a whole. I often use the name ‘Concentration Activity Neurodiversity’ (CAN) when I talk to my patients to emphasise that, with the right support, there should be no deficit or disorder in their functioning. The families with whom I spoke wish for ADHD in their children to be identified early and for the services to provide a just and non-blaming approach in managing ADHD and associated conditions.

Author bio

Bozena Zoritch qualified as a medical doctor from University of Zagreb, Croatia in 1982. She was appointed Consultant Paediatrician in NHS in 1997 and led one of the largest ADHD clinics in the UK for 20 years. She has published in biomedical research before engaging with medical humanities as a PhD student in 2016 at Birkbeck, University of London. She still works for an NHS provider in Surrey as a Consultant in the field of ADHD and autism. She is passionate about ensuring high-quality services for children with neurodiversity through clinical and academic endeavours.