Director's Corner—The Importance of Privacy
November 6, 2013
With all the recent concerns about the collection and use of information gathered by the National Security Agency and other agencies both public and private, I think it is an appropriate time to go over the responsibilities of a federal statistical agency like NCHS.
NCHS and all other federal statistical agencies are governed by four general principles. We must:
- Provide objective information that is relevant to issues of public policy;
- Have credibility with those who use its data and information;
- Have the trust of those whose information it obtains; and
- Have a strong position of independence within the government.
Especially significant is the third principle. 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. 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.
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, and 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.
I want to assure all our information providers that NCHS will continue to take all steps possible to protect the confidentiality of individually identifiable information. We cannot inform the American people about our nation's health using the best quality information without their complete trust in how we protect their information. That trust must be earned each and every day, and we pledge to do just that.