These positions would seem to require a clear social consensus of what changes in the gene pool would be e«-genic. Yet, at the turn of the twenty-first century there exists no body in the United States, as there is in other countries, that decides on the available panel of prenatal tests. Nor is there a forum for public discussion of this issue. Some tests stumble into becoming standard of care due to medico-legal concerns (e.g., MSAFP testing). At other times, decisions are made on an ad hoc bases. Thus, a strongly perceived need by obstetric providers for guidance about cystic fibrosis (CF) screening led to the convening of an National Institutes of Health (NIH) Consensus Development Conference. This group recommended the routine offer of CF carrier screening in pregnancy, but concerns that physicians were not prepared for this change in practice led to the creation of an ad hoc panel charged with creating recommended protocols for implementation (National Institutes of Health Consensus Development Conference). The existence of the panel has not calmed concerns that physicians are not ready to meet the challenge of offering a new population-based test.
As genes for Mendelian disorders and those that confer susceptibility to more common disorders are found in increasing numbers, the lack of any orderly process from gene discovery to test development and then to making that test available to the public becomes increasingly problematic. At this point, healthcare providers are the de facto gatekeepers, relying on recommendations from professional organizations, actions of insurance payers, patient demand, and their own consciences in making decisions about what tests to offer. As genetic knowledge increases, this will become an ever more pressing societal problem.
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