Abstract
In medical literature about management of Intersex, there has been considerable debate addressing ethical issues on medical practice ―informed consent, parents' rights to make decisions about surgery on infants or whether children should be surgically altered to suit the binary gender norms of society―. Selecting the best management for the various intersex situations can be complex, and several proposals concerning ethical principles have emerged. During the annual meeting of the Spanish support group Grapsia, we coordinated a Bioethics and Intersex/DSD discussion group, with the aim to identify some key elements to enhance socio-health care for people with intersex variations and their families. On the one hand, it is necessary to consider the particularities of each context and the constraints imposed by the structure and organization of each country's health systems. On the other hand, it is crucial to include insights of patients taking part in support groups and their families.
Highlights
In medical literature about management of Intersex, there has been considerable debate addressing ethical issues on medical practice ―informed consent, parents’ rights to make decisions about surgery on infants or whether children should be surgically altered to suit the binary gender norms of society―
One of the main research questions was: what is the nature of the problems that have arisen for people diagnosed with an “intersex condition/DSD”? Parents and “affected” people from GrApSIA recognized that depending on the problems or demands we identify, we should find diferent solutions and profiles of clinicians in charge
Patricia Martin (2003) refected on the impact Internet had had when modifying Intersex standards of care, to conclude that in the lack of long-term studies and in the face of traumatic revelations within the intersexed community, “a time to slow down, a time to think and a time to listen to the voices of the intersexed” (p. 169) is necessary
Summary
In medical literature about management of Intersex, there has been considerable debate addressing ethical issues on medical practice ―informed consent, parents’ rights to make decisions about surgery on infants or whether children should be surgically altered to suit the binary gender norms of society―. Selecting the best management for the various intersex situations can be complex, and several proposals concerning ethical principles have emerged. During the annual meeting of the Spanish support group Grapsia, we coordinated a “Bioethics and Intersex/DSD” discussion group, with the aim to identify some key elements to enhance socio-health care for people with intersex variations and their families. It is crucial to include insights of patients taking part in support groups and their families
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