Public participation in medical policy-making and the status of consumer autonomy: the example of newborn-screening programs in the United States.

Objectives: State newborn-screening programs collectively administer the largest genetic-testing initiative in the United States. We sought to assess public involvement in formulating and implementing medical policy in this important area of genetic medicine.

Methods: We surveyed all state newborn-screening programs to ascertain the screening tests performed, the mechanisms and extent of public participation, parental access to information, and policies addressing parental consent or refusal of newborn screening.

Guidelines for the retention, storage, and use of residual dried blood spot samples after newborn screening analysis: statement of the Council of Regional Networks for Genetic Services.

These guidelines provide scientific information for policy development by state health departments considering appropriate use of newborn screening specimens after screening tests are finished. Information was collected, debated, and formulated into a policy statement by the Newborn Screening Committee of the Council of Regional Networks for Genetic Services (CORN), a federally funded national consortium of representatives from 10 regional genetics networks. Newborn screening programs vary widely in approaches and policies concerning residual dried blood spot samples (DBS) collected for newborn screening.