How NCHS Protects Your Privacy

Confidentiality and Security of Information Collected by The National Center for Health Statistics

Training

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Take the NCHS Confidentiality Course

Federal law, good statistical practice, and our ethical obligations to the American people all require that any personal information collected by NCHS be treated with the utmost concern for the privacy of those who provide it.

NCHS collects detailed and often highly personal information from its respondents. Since this information is used for a variety of important purposes, it is critical that it be accurate. Respondents must be able to trust that information they provide to NCHS will be treated with respect, and that the answers they provide will not put them at risk. For that reason, NCHS takes all steps possible to protect the confidentiality of individually identifiable information.

Legally*, NCHS is not permitted to release personal information to anyone – except for those persons or organizations we have clearly mentioned to the respondent before we ask them any questions. All of our respondents have the chance to make up their minds – without any pressure from us – as to (1) whether they want to participate in our surveys and (2) whether they agree with how we would use their information and who we would share it with. When they choose to provide us information, we rigorously observe the restrictions imposed by what we have promised them.

Federal law, upheld by the Fifth Circuit Court of Appeals**, prohibits NCHS from releasing personal information to anyone without consent – no matter who they are and no matter how carefully they say they will take care of the information.

The restriction on who gets to see personal information extends from the highest levels of our government (we can deny the President and any member of Congress access to confidential information as well as Immigration, Justice, and IRS officials) to the kinds of inquiries we are all increasingly worried about (market research firms, insurance companies, employers).

These are not just promises. NCHS has been collecting health statistics since 1957 and in all that time we have not released any confidential information to anyone not entitled to have it. That’s not because there have been no requests for personal information or because no special precautions are needed to prevent a disclosure. It’s because we take the law and our ethical obligations seriously enough to be constantly concerned. Among the things we do to make sure your personal information is not disclosed to unauthorized persons are:

Special security measures that block outside contact with any confidential information stored in NCHS computers.
Requiring that all who could possibly come into contact with confidential information sign a nondisclosure affidavit making them subject to several laws that provide stiff penalties. All staff re-sign it each year.
No names, addresses, or any other item that could directly identify a person or firm are left on internal files unless absolutely needed. In addition, before information is made public any details on jobs, family, births, or residence that, if pieced together with other information, could lead to identification are removed. No electronic data are released without making sure that this information has been removed.
Even when personal information is released with respondent’s consent, the release must be approved by the Center Director and covered by a binding legal agreement. Moreover, we keep close tabs on this information and parties are required to destroy or return it within a specified time or before that if they have finished with it.
Confidentiality training for new staff (who are also fingerprinted) and refresher training for staff already working at the Center.
Random inspections by the NCHS Confidentiality Officer to ensure that staff observe all established security and confidentiality requirements.

These and other regulations that all NCHS staff and contractors are required to follow can be found in the NCHS Staff Manual on Confidentiality [PDF – 342 KB].

Questions? Send us an email at nchsconfidentiality@cdc.gov.

* Several legal provisions provide protection to NCHS respondents. In addition to being subject to Federal regulations concerning the Protection of Human Research Subjects [PDF – 195 KB], NCHS is subject to Privacy Act. Even more importantly, however, the legislation that created the Center, and which authorizes data collection, the Public Health Service Act, contains a provision (42 U.S.C. 242m(d)) that prohibits NCHS from using any personal information for any purpose other than what was described to survey participants and from sharing that information with anyone not clearly mentioned to them. This provision enables the Center to assure respondents strict confidentiality. In addition the Center is subject to provisions of the Confidential Information Protection and Statistical Efficiency Act (CIPSEA) which provides for stiff fines and imprisonment for violation of confidentiality. Reports to OMB on NCHS CIPSEA activities are now available.

** See Akzo-Nobel et al, No. 00-30834 (5th Cir. May 25, 2001)