the use of the data after dissemination. The costs of implementing this plan should be estimated and set aside in future NCS budgets. Dissemination includes not only the publication of findings through reports and scientific papers and the production of documented data files for researchers, but also active support in the use of NCS data by the broadest possible range of qualified investigators.

CHAPTER 5:
ETHICAL PROCEDURES AND COMMUNITY ENGAGEMENT

Criteria for Giving Information to Participants

Recommendation 5-1: The NCS should define the criteria and the process for deciding what individual clinical and research information, such as environmental assessments, test results, and survey scales, will be given to children and their families.

Protection and Release of Information

Recommendation 5-2: NCS and non-NCS investigators should be given equal access to the full NCS data as soon as they are cleaned and documented. To protect respondent confidentiality, all analyses should be performed with the kind of strict safeguards employed by the Census Bureau research data centers.

Community Engagement

Recommendation 5-3: The NCS should engage communities in selected study implementation, data analysis, and data interpretation activities that go beyond recruitment. The NCS should consider requiring every study center to formulate a more detailed plan to engage and collaborate with local communities.

In summary, it is clear from our review that the NCS offers not only enormous potential, but also a large number of conceptual, methodological, and administrative challenges. In addition, funding uncertainties make it difficult to plan beyond the relatively short period for which funds have been appropriated. Like the scientists associated with the study itself, we are eager for it to succeed. We present our conclusions and recommendations in the hope that, as it goes forward, the NCS will achieve its intended objectives and serve as a model of methodological and substantive contributions to important scientific and policy discussions on children’s health and development.



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