Transparency Challenges in Reproductive Health Care

Few medical specialties in the United States are as opaque as assisted reproductive technology (ART). ART operates free of regulation about serious and preventable kinds of errors that might be called ART “never events”: the destruction, contamination, misdiagnosis, and switching of materials that cannot be chalked up to inevitable slips of hand or reasonable lapses in judgment. Elsewhere in health care delivery, these kinds of mistakes — surgery on the wrong body part or patient, for example — are publicly reported by mandate in 25 states and the District of Columbia. But no system exists to track similar such transgressions when they take place at fertility clinics, sperm banks, egg vendors, or surrogacy agencies. Crowd-sourcing can help enhance market transparency about ART never events in the absence of regulation or remedy under public law, private law, or professional associations. This chapter introduces a user-generated platform that solicits reflections from reproductive patients about the care they received. Aggregated and detailed never-event reporting enable patients to select providers who deliver the quality care that’s most relevant to their risks, needs, preferences. This system of patient reviews faces unique challenges, however, beyond the usual concerns about unrepresentative samples, distorted metrics, and the risk of misleading evaluations. It must also account for factors like the stigmatized care, intangible injuries, and out-of-pocket expenses that distinguish medical treatment within the reproductive context.