The 2005 International Consensus Conference on Intersex resulted in a substantive revision of the lexicon and guidelines for treating intersex conditions. The speed with which the new treatment protocol has been adopted by healthcare practitioners and providers is considered unprecedented. However, a number of intersex people and advocacy groups have complained that the recommended revisions are inadequately informed by the testimony of intersex people. In this paper, I argue that such complaints are valid and that, despite the conference conveners stated (...) intention, the revisions perpetuate the epistemic injustice long endured by intersex people. By analyzing the Consensus Conference and its results as a failed attempt to redress the epistemic marginalization of intersex patients and advocacy groups, I am able to identify lingering institutional hurdles to cultivating the virtue of epistemic justice in biomedical practice. (shrink)

This article analyses the phenomenon of epistemic injustice within contemporary healthcare. We begin by detailing the persistent complaints patients make about their testimonial frustration and hermeneutical marginalization, and the negative impact this has on their care. We offer an epistemic analysis of this problem using Miranda Fricker's account of epistemic injustice. We detail two types of epistemic injustice, testimonial and hermeneutical, and identify the negative stereotypes and structural features of modern healthcare practices that generate them. We claim that these stereotypes (...) and structural features render ill persons especially vulnerable to these two types of epistemic injustice. We end by proposing five avenues for further work on epistemic injustice in healthcare. (shrink)

In this paper we argue that ill persons are particularly vulnerable to epistemic injustice in the sense articulated by Fricker. Ill persons are vulnerable to testimonial injustice through the presumptive attribution of characteristics like cognitive unreliability and emotional instability that downgrade the credibility of their testimonies. Ill persons are also vulnerable to hermeneutical injustice because many aspects of the experience of illness are difficult to understand and communicate and this often owes to gaps in collective hermeneutical resources. We then argue (...) that epistemic injustice arises in part owing to the epistemic privilege enjoyed by the practitioners and institutions of contemporary healthcare services—the former owing to their training, expertise, and third-person psychology, and the latter owing to their implicit privileging of certain styles of articulating and evidencing testimonies in ways that marginalise ill persons. We suggest that a phenomenological toolkit may be part of an effort to ameliorate epistemic injustice. (shrink)

With a few notable exceptions disability studies has not taken account of intersexuality, and it is principally through the lenses of feminist and queer-theory oriented ethical discussions but not through ‘straight’ bioethics that modes valuing intersex difference have been proposed. Meanwhile, the medical presupposition that intersex characteristics are inherently disabling to social viability remains the taken-for-granted truth from which clinical practice proceeds. In this paper I argue against bioethical perspectives that justify extensive and invasive pre- and post-natal medical interference to (...) eradicate intersex. I argue instead that to constitute the necessary conditions for the recognition of the intersexed child as a person, a life valid in its own right, clinicians must refrain from aggressive interference. Clinical specialists presuppose that intersexed children will be socially disabled and unrecognizable as persons; frustrated by the general failure of traditional interventions to assign a sex, clinicians are now pursuing prenatal technologies, including selective termination, to erase intersex. (shrink)

Background Surgery for intersex infants should be delayed until individuals are able to decide for themselves, except where it is a medical necessity. In an ideal world, this single principle would suffice and such surgeries could be totally prohibited. Unfortunately, the world is not perfect, and, in some places, intersex neonates are at risk of being abandoned, mutilated or even killed. As long as intersex persons are at such high risk in some places, any ethical guidelines for intersex surgeries will (...) need to take these extreme risks of harm into account. Main text I therefore argue for five basic principles that ought to inform ethics guidelines for surgical interventions in intersex children, specifically in contexts in which such children are at risk of significant harm. What I set out to come up with is a set of principles that do not completely prohibit surgery, but only allow it where a strong case can be made for its necessity, in the best interests of the child, and where there is some kind of oversight to prevent misuse. The first principle is that interventions as drastic as these surgeries should only be performed when there is strong evidence that they are beneficial and not harmful. The second principle is that in surgeries should normally only be performed in cases of true medical necessity. Principle three is that surgeries should normally be delayed until such time as the intersex person is mature enough to assent to treatment or decide against it. Principle four is that the conventional ethical requirements regarding truth telling apply equally to intersex children as to anyone else. The final principle is that where physicians or parents think that surgery is in the best interests of the child, the burden of proof lies with them. Conclusion It is hoped that these principles might help medical teams and parents make better decisions about intersex surgeries on children, and they would make such surgeries very rare indeed, if they happen at all. (shrink)

The literature on epistemic injustice has been helpful for highlighting some of the epistemic harms that have long troubled those working in area studies that concern oppressed populations. Nonetheless, a good deal of this literature is oriented toward those in a position to perpetrate injustices, rather than those who historically have been harmed by them. This orientation, I argue, is ill-suited to the work of epistemic decolonization. In this essay, I call and hold attention to the epistemic interests of those (...) who are epistemically marginalized on account of relations of dominance and oppression. To do so, I draw on Kristie Dotson’s work, which uses a systems approach focused on epistemic agency. I develop Dotson’s insights further to argue that epistemic inclusions may be just as pernicious as epistemic exclusions Specifically, I highlight some of the ways in which epistemic agents can be included in epistemic systems in a manner that is epistemically exploitative—extracting epistemic labor coercively or in ways that are distinctly non-reciprocal. I then turn to María Lugones’ distinction between horizontal and vertical practices to discuss avenues of resisting both exclusions and inclusions that thwart the epistemic agency of marginalized knowers. (shrink)

What are the ethics of child genital cutting? In a recent issue of the journal, Duivenbode and Padela (2019) called for a renewed discussion of this question. Noting that modern health care systems...

In April 2018, the International Association of Athletics Federations released new regulations placing a ceiling on women athletes’ natural testosterone levels to “ensure fair and meaningful competition.” The regulations revise previous ones with the same intent. They require women with higher natural levels of testosterone and androgen sensitivity who compete in a set of “restricted” events to lower their testosterone levels to below a designated threshold. If they do not lower their testosterone, women may compete in the male category, in (...) an intersex category, at the national level, or in unrestricted events. Women may also challenge the regulation, whether or not they have lowered their testosterone, or quit sport. Irrespective of IAAF’s stated aims, the options forced by the new regulations are impossible choices. They violate dignity, threaten privacy, and mete out both suspicion and judgement on the sex and gender identity of the athletes regulated. (shrink)

There have been growing calls within Australia and beyond to defer medical interventions for children born with variations in their sex characteristics. These calls are increasingly grounded in the claim that such interventions when performed on infants and young children are a violation of their human rights. This paper examines the basis for this claim. It also examines the differences between the principles-based approach to medical ethics which has tended to dominant decisions regarding the treatment of children born with variations (...) in their sex characteristics, relative to the adoption of a rights-based approach. It identifies the points of complementarity between these two discourses but suggests that a rights-based approach offers some unique and differing insights into several issues concerning children born with variations in their sex characteristics. (shrink)