“What if There's Something Wrong with Her?”‐How Biomedical Technologies Contribute to Epistemic Injustice in Healthcare

Abstract

While there is a steadily growing literature on epistemic injustice in healthcare, there are few discussions of the role that biomedical technologies play in harming patients in their capacity as knowers. Through an analysis of newborn and pediatric genetic and genomic sequencing technologies (GSTs), I argue that biomedical technologies can lead to epistemic injustice through two primary pathways: epistemic capture and value partitioning. I close by discussing the larger ethical and political context of critical analyses of GSTs and their broader implications for just and equitable healthcare delivery.

Ethical considerations in gene selection for reproductive carrier screening

“…Such initiatives have been underscored by increasing awareness of the benefits of offering carrier screening to anyone intending to have children (Henneman et al 2016;McClaren et al 2011). They are also supported by professional colleges and societies as well as patient support organizations (Edwards et al 2015;Grody et al 2013;Ong et al 2018;RANZCOG 2019). A major rationale for population RGCS is that most children with severe recessive genetic conditions are born into families where there is no known family history.…”

“…The perception of a condition’s severity can be influenced by many different factors, and could differ depending on whose perspective is considered: a prospective parent with no known family history, a person with lived experience of the condition under consideration, a carer, a medical specialist who sees patients who have the condition, and so on. A further relevant consideration is the ongoing debate regarding how health, illness and disability should be construed, and the societal norms and other factors that affect perceptions of differences in health and ability (Reynolds 2020 ).…”

Rethinking Fetal Personhood in Conceptualizing Roe

“…The gestational testing economy is a technology of pathological diagnosis. Such medical technologies mark an expanding range of human variations as either pathological or neutrally normal (Davis 2021;Reynolds 2020). The available option of termination based on prenatal predictions of present or future pathology could be understand as a form of what has been cautioned against as "medical dehumanization" (Stern 2021).…”

“…As this largely pathological information profile increases with the development and commercial marketing of more testing, a woman's picture of her future child continuously moves further away from a description of a recognizable actual child carrying out a lived life. Such a gap between the medical profile of the fetus and an imagined child confuses rather than clarifies reproductive decisionmaking regarding continued testing, fetal evaluation, and termination options (Beisecker 2019;Reynolds 2020;Werner-Lin et al 2019).…”

Epistemic Oppression and Ableism in Bioethics

“…Disability theorists have often noted that it is problematic to characterize disabled people's bodyminds and experiences in terms of lack; what has received less attention until recently is that disabled people are categorically assumed to lack the ability to make epistemic contributions, even—or perhaps, especially—when it comes to reports regarding our own lived experiences (Wendell 1989; Ho 2011; Barnes 2016; Clare 2017; Garland-Thomson 2017; Scully 2018; Peña-Guzmán and Reynolds 2019; Cupples 2020; Reynolds 2020). David Peña-Guzmán and Joel Michael Reynolds suggest that we should think of ableism as an epistemic schema composed of “implicit and explicit values, norms, biases, impulses, desires, fantasies, and assumptions that condition what counts as knowledge, who counts as a knower, and how knowledge claims are interpreted, assessed, and adjudicated within a given epistemic community” (Peña-Guzmán and Reynolds 2019, 208).…”