The Role of Support Groups, Advocacy Groups,andOther Interested Parties in Improving the Care of Patients with Congenital Adrenal Hyperplasia: Pleas and Warnings

It may be appropriate to review the objective of Rotary International—to encourage and foster the ideal of service as a basis of worthy enterprise [1]. This involves the development of opportunities for service, maintenance of high ethical standards in business and professions, the recognition of the worthiness of all useful occupations, and the dignifying of every occupation as an opportunity to serve society. Their philosophy is expressed in the "Rotarian four-way test" [2], a type of litmus test used to determine whether a planned action is compatible with the Rotarian spirit. The questions posed by the "four-way test" are the following (1) Is it the truth? (2) Is it fair to all concerned? (3) Will it build goodwill and better friendships? and (4) Will it be beneficial to all concerned? The authors submit that such a test would make a good standard for assessing the actions of support and advocacy groups involved in obtaining and sustaining the best care for patients with congenital adrenal hyperplasia (CAH) and other disorders of sex development (DSD).In recent decades, there have been many positive changes toward a more humanistic approach to medical care provided to patients [3–5]. This has certainly been true for the person born with CAH, with or without ambiguous genitalia. This is likewise true for other DSDs. Basic among these changes are full disclosure of all known medical information and findings to the patient and their families, respect for patient privacy with regard to unnecessary physical exposure during clinical examinations for teaching purposes, and the inherent right of parents or patients to make decisions regarding therapy. These include in some instances gender assignment, after being fully informed of the medical and psychological ramifications. We strongly believe all of these changes pass the four-way Rotarian test. The community of health care providers has progressively adopted these approaches.Optimal care involves a group of well-info