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Speaking from and to the growing movement among academics to become involved with 'socially-engaged' work, this volume presents first-person case studies of attempts to fix serious ethical problems in medical practice and research. It highlights the critical difference between the pundit approach to bioethics and the interventional approach - the talkers and the doers - and points to how abused and damaged the doers often end up. Chapters cover a diverse set of topics, including the troubling influence of for-profit businesses on public health policy, the politics of exposing histories of unjust medical research, the challenges of patient rights' work in sexuality and reproduction, collaborations between NGOs and academics, methods for changing entrenched yet harmful medical practices, engaging public policy through educating governmental leaders, and whistleblowing. The trending interest in the interplay of academia and advocacy and the growing importance of 'socially-engaged' work by academics make this a timely and much-needed resource.
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.
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