This chapter tracks the author’s work as an historian of medicine working in and with the intersex patient rights movement for about twenty years. It explores the techniques used by intersex rights advocates and activists and tries to parse out why so little change has occurred in the medical realm for children born with intersex conditions. The article provides an introduction to the biology and politics of intersex and considers what seems to work and not work when it comes to trying to change an entrenched medical practice. The author also explores the issue of working in and for an identity-based rights movement when one does not have that identity.

In this introduction to Bioethics in Action, editors Françoise Baylis and Alice Dreger explain that this volume is a work borne of shared frustration: frustration over seeing many specific instances of bad behavior, poor judgment, dangerous ignorance, harmful cultures, or outright injustices in contemporary medical care and medical research; frustration over medical systems punishing whistleblowers and agents of positive change while rewarding bad actors; frustration over the public being distracted by sexy bioethics micro-punditry while so much harm is accruing, largely unacknowledged, at a much larger scale; frustration especially at how “bioethics” has come to be understood—within the academic realm as something that is to be measured by external grants and (secondarily) publications, and within the public realm as sporty commentary on oversimplified medical controversies purposefully dramatized to increase media outlets’ advertisement revenues. This volume speaks to a different type of ethics that we call “Impact Ethics”— fundamentally oriented toward public service, often challenging the ‘powers-that-be’ in a direct fashion. We suggest that the outcomes that ought to matter in bioethics are witnessing and ending injustices, improving patients’ lives, and defending and protecting research participants’ rights—but we recognize this kind of work can be personally highly costly.

Most types of conjoined twins appear to result from incomplete splitting of a single fertilized ovum, but some conformations termed "conjoined twinning" may involve a fusion of closely approximated embryos. The surgical, medical, and social challenges of separations speak to the need to provide thoughtfully integrated health care for conjoined twins and their families. When separation is considered, surgeons need to determine the extent and nature of the conjoinment, including whether there is a shared vascular circulation or shared organs. They also must determine the chances of success for either of the twins and assess their degree of certainty in the matter. This chapter presents two recent cases that demonstrate in more depth the complex ethical and legal arguments that can attend cases of separation in conjoined twins, namely the cases of the Ladan Bijani and Laleh Bijani, and the Michelangelo Attard and Rina Attard.

This chapter explores ethical issues in the treatment of children who have disorders of sex development (DSD). For the past half-century, much of the medical literature on the treatment of children with DSD has focused on gender, including patient gender identity, gender role, and sexual orientation. Historically, in the pediatric care of children diagnosed with DSD, modern medical approaches have focused on attempting to produce an individual who is gender-typical in terms of physical appearance, self identity, and behavior, including sexual orientation. The multidisciplinary team as envisioned in the DSD consensus statement includes specialists in pediatric endocrinology, pediatric surgery or urology, psychology and/or psychiatry, gynecology, genetics, social work, and medical ethics. Hormone treatments necessary for the induction of puberty typically occur at a time when the child's maturity level allows her or him to participate in decision making, as facilitated by a behavioral health professional.