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Project Title:
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Collecting, Storing, Accessing, and Protecting Social Survey Data Containing Biological Measures
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PIN:
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CNST-I-07-01-A
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Major Unit:
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Division of Behavioral and Social Sciences and Education
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Sub Unit:
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Committee on Population
Committee on National Statistics
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RSO:
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Cohen, Barney
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Subject/Focus Area:
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Behavioral and Social Sciences
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Project Scope
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An ad hoc panel, operating under the auspices of the Committee on National Statistics and the Committee on Population, will organize a workshop on issues related to informed consent, data collection, confidentiality protection, data archiving, and data access for multipurpose population surveys that collect genetic and biological specimens and measures in addition to more traditional socioeconomic-demographic, behavioral-lifestyle, and physical and mental health measures. Based on (a) the panel's interpretation of the existing literature in this area; (b) the results from a set of papers that the panel will commission; and (c) the discussion from the open workshop, the panel will prepare a report with recommendations for best practices, procedures, and guidance for funding agencies, institutional review boards, and researchers to promote the benefits from biological measures in multipurpose population surveys while respecting participants and protecting the confidentiality of their data.
Issues the panel would review, with particular reference to the surveys sponsored by National Institute on Aging (NIA), include:
Information that should be provided for informed consent to survey respondents and how consent form language affects people's willingness to participate in surveys that collect biological and other measures.
Methods to collect and process genetic and biological specimens and measures to minimize respondent burden, maximize research potential, and protect confidentiality and privacy.
Relevant laws, regulations, and policies, including the Common Rule for Protection of Human Subjects, the Confidential Information Protection and Statistical Efficiency Act of 2002, the 2002 regulations issued under the Health Insurance Portability and Accountability Act of 1996, and relevant NIH policies on data sharing, certificates of confidentiality, and related topics, including the proposed repository for genome-wide association studies .
Factors for institutional review boards (IRBs) to consider in reviewing requests for the collection of biological specimens and measures in surveys.
The risks and evidence of actual misuse of biological specimens and measures in surveys.
Whether and which statistical techniques can anonymize genetic and other biological measures in microdata files while preserving their utility for research.
The costs and benefits of alternative systems for archiving genetic and other biological specimens and measures produced from population surveys to permit later research use while protecting confidentiality.
The costs and benefits of alternative forms of access to microdata containing genetic and biological measures, such as secure research data centers, licensing, and others.
It will develop a report with recommendations for practices and procedures that can best facilitate research and protect participants as this area moves forward over the next 5-10 years.
The sponsor for this project is the National Institute on Aging.
The approximate start date for the project is September 1, 2007.
A report will be issued at the end of the project in approximately 24 months.
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Project Duration:
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24 months
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Provide FEEDBACK on this project.
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Contact the Public Access Records Office to make an inquiry, request a list of the public access file materials, or obtain a copy of the materials found in the file.
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Tel:
202.334.2000