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  • 8/10/2019 staffmanual2004.pdf

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    National Center for Health Statistics

    Edward J. Sondik, Ph.D., Director

    Jennifer H. Madans, Ph.D., Acting Co-Deputy Director

    Michael H. Sadagursky, Acting Co-Deputy Director

    Jennifer H. Madans, Ph.D., Associate Director for Science

    Jennifer H. Madans, Ph.D., Acting Associate Director for

    Planning, Budget, and Legislation

    Michael H. Sadagursky, Associate Director for

    Management and Operations

    Lawrence H. Cox, Ph.D., Associate Director for Research

    and Methodology

    Margot A. Palmer, Director for Information Technology

    Margot A. Palmer, Acting Director for Information Services

    Linda T. Bilheimer, Ph.D., Associate Director for Analysis,

    Epidemiology, and Health Promotion

    Charles J. Rothwell, M.S., Director for Vital Statistics

    Jane E. Sisk, Ph.D., Director for Health Care Statistics

    Jane F. Gentleman, Ph.D., Director for Health Interview

    Statistics

    Clifford L. Johnson, Director for Health and Nutrition

    Examination Surveys

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    Foreword

    TheNCHSStaffManualonConfidentialitywasoriginallypublishedin July1978andreprintedinApril1980and

    inAugust1997.Itwasreissuedinearlieryearsmainlytoinformstaffofchangesinlawsandregulations.Inviewof

    themanychangesintechnologiesrelatedtodatahandlinganddisseminationthathavetakenplacein recentyears,new

    proceduresandpolicieshavebeendevelopedrequiringanextensiverevisionoftheManual.

    Theconfidentialityof recordsisamatterofprimaryconcerntotheNationalCenterforHealthStatistics(NCHS).

    InordertoelicithealthinformationfromtheAmericanpeopleandfromthehealthcareprovidersthroughoursurveys,

    wemustbeableto assurethemthatthisinformationwillbeprotectedfromtheeyesandearsofallunauthorized

    persons.Thismeansthatwemusthavestronglawsenablingus toprotect theserecords,andthatwemustestablish

    andfollowprocedurestogivethemsuchprotection.ThisManualstatestheCenterspoliciesthatimplementFederal

    lawandensurethatallconfidentialinformationwillbe fullyprotected.Itshouldbeviewedinunisonwiththe

    NCHSdatareleasepolicies addressingaccesstodataandNCHSResearchEthicsReviewBoardRequirements .The

    NCHSDirectorretainstheauthority toallowexceptionstopoliciescontainedinthismanualwherethereareuniqueor

    specialcircumstances.

    TheCenterisproudofitsrecordinprotectingitsfilesfromimproperdisclosures,andit isveryimportantthatwe

    continuetodoso.Thecontinuingsuccessofourworkdependson it.Therefore, I amcountingoneverymemberofthestaff oftheCenter, aswellasthosewhoworkwithNCHS,tokeepacopyofthisManualhandy, to bethoroughly

    familiarwithitscontents,andtoabideby thepoliciesinthemanualcarefullyandconscientiously.

    EdwardJ.Sondik,Ph.D.Director

    http://www.cdc.gov/nchs/data/NCHS%20Micro-Data%20Release%20Policy%204-02A.pdfhttp://www.cdc.gov/nchs/data/NCHS%20Micro-Data%20Release%20Policy%204-02A.pdfhttp://www.cdc.gov/nchs/data/NCHS%20Micro-Data%20Release%20Policy%204-02A.pdfhttp://www.cdc.gov/od/ads/hsr2.htmhttp://www.cdc.gov/od/ads/hsr2.htmhttp://www.cdc.gov/od/ads/hsr2.htmhttp://www.cdc.gov/od/ads/hsr2.htmhttp://www.cdc.gov/nchs/data/NCHS%20Micro-Data%20Release%20Policy%204-02A.pdf
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    Contents

    Foreword . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ii

    1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

    2. Legislative and Regulatory Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

    2.1 Section 308(d) of the Public Health Service Act . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

    2.2 PrivacyActof1974 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2

    2.3 ConfidentialInformationProtectionandStatisticalEfficiencyAct. . . . . . . . . . . . . . . . . . . . . . . . . . . 2

    2.4 Freedomof InformationAct . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

    2.5 Federal Law Governing Federal Employees Behavior. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

    3. Definitions. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

    4. EmployeeResponsibilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44.1 Division and Office Directors. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

    4.2 ConfidentialityOfficer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

    4.3 SupervisorsResponsibilities. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

    4.4 Individual Federal Employees Responsibilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

    4.5 Contractors and Agents Responsibilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

    4.6 Collaborators Responsibilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

    4.7 Administrative Officers Responsibilities. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

    5. NCHS Policies on Consent and Assurances ofConfidentiality. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

    5.1 Consent . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

    5.2 Assurances of Confidentiality. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

    5.3 Responsibility for Formal Assurances of Confidentiality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

    5.4 DataCollected Directly FromIndividuals orEstablishments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

    5.5 Data Collected From Another Organization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

    5.6 Data Collected Over the Telephone. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

    5.7 Repository ofAssurances. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

    6. TreatmentofRequestsforInformationUnderFreedomofInformationAct. . . . . . . . . . . . . . . . . . . . . . . 9

    7. The Protection of Confidential Records and Data Systems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

    7.1 Physical Protection of Confidential Records . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

    7.2 Automated Data Processing Systems Security General. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

    8. Authorized Disclosures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

    8.1 Disclosure to the Parent Locator Service . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

    8.2 DisclosuresPermittedbySection308(d)ofthePublicHealthServiceAct. . . . . . . . . . . . . . . . . . . 12

    v

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    8.3 Disclosures Within NCHS. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12

    8.4 Disclosures Within the Department. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12

    8.5 Transfers ofData toOtherDepartments of theFederalGovernment. . . . . . . . . . . . . . . . . . . . . . . . . 12

    8.6 Special Cooperative or Contractual Arrangements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

    9. AvoidingInadvertentDisclosures ThroughRelease ofMicrodata. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

    9.1 Problem. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

    9.2 Rules. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 149.3 Restricted Access toMicrodata Files WithIdentifiable Data. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

    10. Avoiding Inadvertent Disclosures in Published Tabular Data. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

    10.1 Types of Disclosure. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

    10.2 Problem. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

    10.3 Special Guidelines for Avoiding Disclosure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16

    10.4 Evaluating a Disclosure Problem. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16

    10.5 Measures to Avoid Disclosure. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

    11. AvoidingDisclosure in Other Types of Published Information . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

    Appendixes

    AppendixA.RequirementsRelatingtoConfidentialityandPrivacyinDataCollectionandData Processing Contracts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18

    I. Purpose . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18

    II. Background. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18

    III. Policy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18

    SafeguardsforIndividualsandEstablishmentsAgainstInvationsofPrivacy . . . . . . . . . . . . . . . . . . . . . 18

    Appendix B. NCHSNondisclosure Affidavit for FederalEmployees. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20

    Appendix C. NCHS Nondisclosure Affidavit for Contractors. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21

    Appendix D.Confidentiality, Security, and Related ContactPersons. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22

    vi

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    NationalCenterforHealthStatisticsStaffManualonConfidentiality

    1.

    Introduction

    Confidentialityprotectionhasmanyaspects.Thismanualattemptstodealwithmostofthem.Informationandrules

    arepresentedgoverning:

    A. Legalrequirementsandpenalties,

    B. Employees1 responsibilities,

    C. Promiseofconfidentialitytorespondents,

    D. Treatmentofrequestsforinformation,

    E. Physicalprotectionofrecords,

    F. Disclosuresthatmaybepermitted,

    G. Avoidanceofunintentionaldisclosuresthroughpublisheddata,

    H. Maintenanceofconfidentialityin thereleaseofmicrodata,and

    I. Requirementsplacedoncontractors.

    2. LegislativeandRegulatoryBackground

    TheHealthServicesResearchandEvaluationandHealthStatisticsActof1974(P.L.93353)establishedNCHSin

    law.Indoingso,itmandatedthatNCHSmakestheinformationitcollectsavailableonaswideabasisaspracticable.

    However, it placed a veryimportantrestriction on themanner in which this was to beaccomplished byenjoining NCHS

    tostrictlyobservetheassurancesofconfidentialityprovidedtoitsrespondents.Makingusefulhealthstatisticsavailableto

    asmanypeopleaspossibleisveryimportant,butitisequallyimportanttodosoinamannerthatwillnotinanywayharm

    theprovidersofthesestatistics.

    Althoughitisamatterofprinciple,aswellasgoodstatisticalpractice,fortheCentertomaintaintheconfidentiality

    ofrecords,asetoflawsandregulationsexiststhatrequiresandpermitstheCentertodoso.

    2.1

    Section

    308(d)

    of

    the

    Public

    Health

    Service

    Act

    (42

    U.S.C.

    242m(d))

    ThissectionprovidesthebasiclegalrequirementforprotectingtheCentersrecords.Itreads:

    No information, if an establishment or person supplying the information or described in it is identifiable,obtainedinthecourseofactivitiesundertakenorsupportedundersection242b,242k,or242lofthistitlemaybeusedforanypurposeotherthanthepurposeforwhichitwassuppliedunlesssuchestablishmentorpersonhasconsented(asdeterminedunderregulationsoftheSecretary)toitsuseforsuchotherpurpose;andinthecaseofinformationobtainedinthecourseofhealthstatisticalorepidemiologicalactivitiesundersection242bor242kofthistitle,suchinformationmaynotbepublishedorreleasedinotherformiftheparticularestablishmentorperson supplying the information or described in it is identifiable unless such establishment or person hasconsented(asdeterminedunderregulationsoftheSecretary)toitspublicationorreleaseinotherform.

    Thissectionoftheactisinterpretedasfollows:WhenevertheCenterrequestsinformation,itapprisesthepersonor

    agencysupplyingtheinformationastotheusestobemadeofit.ThefirstclauseofSection308(d)guaranteesthatthereaftertheCenterwillbelimitedtothoseusessospecifiedtothe

    supplier.

    1Wherever the word employees is used in this document, contractors, agents, fellows, and all other persons whohave signed a nondisclosure

    agreement (AppendixAor B)arealsoincluded.

    - 1 -

    http://www4.law.cornell.edu/uscode/42/242m.htmlhttp://www4.law.cornell.edu/uscode/42/242m.htmlhttp://www4.law.cornell.edu/uscode/42/242m.htmlhttp://www4.law.cornell.edu/uscode/42/242m.htmlhttp://www4.law.cornell.edu/uscode/42/242m.htmlhttp://www4.law.cornell.edu/uscode/42/242m.htmlhttp://www4.law.cornell.edu/uscode/42/242m.htmlhttp://www4.law.cornell.edu/uscode/42/242m.htmlhttp://www4.law.cornell.edu/uscode/42/242m.htmlhttp://www4.law.cornell.edu/uscode/42/242m.htmlhttp://www4.law.cornell.edu/uscode/42/242m.htmlhttp://www4.law.cornell.edu/uscode/42/242m.htmlhttp://www4.law.cornell.edu/uscode/42/242m.htmlhttp://www4.law.cornell.edu/uscode/42/242m.htmlhttp://www4.law.cornell.edu/uscode/42/242m.htmlhttp://www4.law.cornell.edu/uscode/42/242m.htmlhttp://www4.law.cornell.edu/uscode/42/242m.htmlhttp://www4.law.cornell.edu/uscode/42/242m.htmlhttp://www4.law.cornell.edu/uscode/42/242m.htmlhttp://www4.law.cornell.edu/uscode/42/242m.htmlhttp://www4.law.cornell.edu/uscode/42/242m.htmlhttp://www4.law.cornell.edu/uscode/42/242m.htmlhttp://www4.law.cornell.edu/uscode/42/242m.htmlhttp://www4.law.cornell.edu/uscode/42/242m.html
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    The second clause states that the Center may never release identifiable information (See Section 3. Definitions)

    without the advance, explicit approvalof the person or establishment supplying the informationorby the person or

    establishmentdescribedintheinformation.

    Access to information in identifiable form maybe grantedonly tostaff ofNCHS, its qualified agents, and those

    collaboratorsandotherparties(includingotherFederalagencies)explicitlydescribedinthesurveyconsentstatement,and

    maybeemployedbythemonlyinactivitiesdirectlyaimedatachievingthespecificpurposesasconveyedtorespondents.

    2.2 PrivacyActof1974(5U.S.C.552a)

    ThisactalsoprovidesfortheconfidentialtreatmentofrecordsofindividualsthataremaintainedbyaFederalagency

    that areretrieved byeither theindividualsname orsomeother identifier. Thislaw alsorequires that suchrecordsin

    NCHSaretobeprotectedfromusesotherthanthosepurposesforwhichtheywerecollectedwithouttheconsentof the

    individualunlessauthorizedbythePrivacyAct.Itfurtherrequiresagenciesto(1)collectonlythatinformationnecessary

    toperformagencyfunctions;(2)publishdescriptionsofdatasystemscontainingnamesorotherdirectidentifiers(called

    systems of records)so that thepubliccanlearnwhatidentifiable recordsare maintainedby theagency;(3) inform

    individualsatthetimeofdatacollectionastothelegislativeauthorityunderwhichitisrequested,whethertherequestis

    mandatoryorvoluntary,theconsequences,ifany,ofnonresponse,andthepurposesandusestobemadeofthedata;(4)

    maintain no records on how an individual exercises his rights under the first amendment except with special legal

    authorization; (5) with certainexceptions, permit individuals to examine recordsmaintained about themselves and to

    challenge the accuracy of those records; (6) establish rules of conduct governing persons involved in collecting and

    maintainingrecords; and(7) establishappropriateadministrative, technical, andphysical safeguards toprotectrecords.

    Employeesofagenciesandtheircontractorssubjecttotheactwhowillfullydisclosepersonalinformationcontrarytothelaw,orwhofailtogivenoticeofasystemofrecords,maybefinedupto$5,000,andtheagencymaybesuedfordamages.

    Finally,theactplacessevererestrictionsontheuseofanindividualsSocialSecuritynumber,suchthattheCenteris

    precludedfromcollectingandusingthemwithouttheexplicitconsentofrespondents.

    The Department of Health and Human Services (DHHS) has allowed NCHS to have a K4 exemptionfor its

    statisticalsystems,aspermittedunderthePrivacyAct.ThismeansthatNCHSdoesnothavetoallowsubjectsofitsdata

    filestohaveaccesstotherecordsaboutthemselvesinthosefiles.ThisexceptiontoPrivacyActrequirementsispermitted

    becauseNCHSdoesnothaveinitsdatafilesanyrecordsthatareusedinanydirectwaytoaffecttherights,benefits,or

    privilegesofpersonswhoserecordsexistinthesefiles;rather,thefilesareusedstrictlyforstatisticalandrelatedpurposes.

    TheCenter,however,mustcomplywithallotherrequirementsofthePrivacyAct.

    ItmustbestressedthatwhileunderthePrivacyActidentifiableinformationmaybereleasedtoanumberofparties

    suchastheGeneralAccountingOffice,eitherhouseofCongress,andcourts,theprovisionsofSection308(d)ofthePublic

    HealthServiceAct,whicharemuchmorestrict,wouldtakeprecedence.Withouttheconsentofrespondents,identifiable

    information

    will

    not

    be

    shared

    with

    such

    parties.Regulations (45CFRPart5b) havebeenpublishedbyDHHSprovidingforimplementationofthePrivacyActwithin

    thisDepartment.Allemployeesareboundtocomplywiththeseregulations.

    2.3 Confidential InformationProtectionandStatisticalEfficiencyAct

    (NOU.S.CODELINKAVAILABLEATPRESENT.ConsultKathyMoss.)

    Thislegislationestablishesstrongstandards fortheprotectionofconfidentialdataprovidedto Federalagencies for

    statisticalpurposes.Thislawrequiresthatalldatacollectedforstatisticalpurposesundera pledgeof confidentialitybe

    used only for statistical purposes. As such, it covers all data collections currently undertaken by the Center. It also

    providesstrongcriminalpenaltiesforunauthorizeddisclosureofconfidentialstatisticalinformation.Concerningfinesand

    penalties,theactstates:

    Whoever, being anofficer, employee,or agent ofanagencyacquiringinformation forexclusivelystatisticalpurposes,...comesintopossessionofsuchinformationbyreasonofhisorherbeinganofficer,employee,oragentand,knowingthatthedisclosureofthespecificinformationisprohibitedundertheprovisionsofthistitle,willfullydisclosestheinformationinanymannertoapersonoragencynotentitledtoreceiveit,shallbeguiltyofaclassEfelonyandimprisonedfornotmorethan5years,orfinednotmorethan$250,000,orboth.

    ThisActdoesnotdiminishanyconfidentialityprotectionsuchasNCHS308(d)authorityorthoseofthePrivacyAct.

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    TheAct alsoauthorizes thedesignationof agents toperformstatisticalactivities.These agents functionunder the

    supervisionofNCHSemployeesandaresubjecttothesameprovisionsoflawwithregardtoconfidentialityasanNCHS

    employee.

    2.4

    Freedom

    of

    Information

    Act

    (FOIA)

    (5

    U.S.C.

    552)

    Firstpassed in1967andamendedmost recentlyin 1996, this act requiresFederalagencies tomaketheir records

    availabletopersonswhorequestthem.WhileFOIAseekstomakegovernmentinformationmorewidelyavailable,itdoes

    notunderminetheprivacyprotectionrequiredunderthelawsjustcited.Severalkindsofrecordsarespecificallyexemptedfrom the disclosure requirements of the FOIA. Two exclusions provided in Section 552(b) of the act are of special

    relevance:Subsection(6)exemptspersonalandmedicalfilesandsimilarfilesthedisclosureofwhichwouldconstitute

    aclearlyunwarrantedinvasionofpersonalprivacyandSubsection(3)providesthatmattersspecificallyexemptedfrom

    disclosurebystatutearealsoexcludedfromthedisclosurerequirement.InthecaseofNCHS,theaforementionedSection

    308(d)ofthePublicHealthServiceActrepresentsstatutoryprotection.ThusnorecordsthatarecollectedunderthePublic

    HealthServiceActandprotectedbySection308(d)ofthatactarerequiredbytheFOIAtobereleasedbyanyone.

    RegulationshavebeenpublishedbyDHHSimplementingFOIA.

    IntheeventthatNCHSstafforcontractorsreceiveadatarequestcitingtheFOIA,theyarenottoresponddirectly,but

    mustrefer therequesttotheNCHSFreedomofInformationCoordinator immediately.

    2.5 FederalLawGoverningFederalEmployeesBehavior(18U.S.C.1905)

    Thislaw includesthe following provision, which is alsorelevant to themaintenanceof confidentiality forNCHSrecords:

    DisclosureofConfidentialInformation

    Whoever,beinganofficeroremployeeoftheUnitedStatesoranydepartmentoragencythereof,...

    publishes,divulges,disclosesormakesknowninanymannerortoanyextentnotauthorizedbylaw

    anyinformationcomingtohiminthecourseofhisemploymentorofficialdutiesorbyreasonofany

    examinationorinvestigationmadeby,orreturn,reportorrecordmadetoorfiledwith,suchdepartment

    or agency or officer or employee thereof, which information relates to trade secrets, processes,

    operations,styleofwork,orapparatus,or totheidentity,confidentialstatisticaldataamountorsource

    of any income, profits, losses, or expenditures of any person, firm, partnership, corporation or

    association; or permits any income return or copy thereof or any book containing any abstract or

    particularthereoftobeseenorexaminedbyanypersonexceptasprovidedbylaw,shallbefinedunder

    this title, or imprisoned not more than one year, or both; and shall be removed from office or

    employment.

    3. Definitions

    Throughoutthisdocument,certainkeytermsareusedthatwarrantclearunderstanding.Thereaderiscautionedthat

    presentusagemaynotalwayscoincidewithusagebyotheragenciesorentities.

    IdentifiableInformationreferstoinformationthatcanbeusedtoestablishindividualorestablishmentidentity,whether

    directlyusing items such as name, address, or unique identifying numberor indirectlyby linking data about

    respondentswithexternalinformationthatdirectlyidentifiesthem.

    ConfidentialInformationisanyidentifiableinformationorinformationassociatedwithidentifiableinformationabout

    apersonorestablishmentcollectedunderanassurancethatrestrictsthedegreetowhichtheinformationcanbeshared

    withothers.Itisimportanttounderstandthatinformationthatbyitselfwouldnot leadtotheidentityofa respondent,butwhich

    coulddosoifcombinedwithinformationalreadyreleased(e.g.,theidentitiesofareasinwhichasurveywasconducted),

    mustalsobeconsideredconfidential.

    A disclosure occurs when identifiable information concerning an NCHS respondent (including the fact of his

    participationinanNCHSsurvey)ismadeknowntoa thirdparty.Disclosuresmaybeauthorized(aswhenarespondent

    hasconsented to theinformationbeing sodivulged),unauthorized (aswheninformationis intentionally revealedto a

    partynotconsentedtobytherespondent),or inadvertent(aswhenatabulationorfileisunintentionallymadeavailableto

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    the public that reveals or can beused to reveal personal informationprovidedbyanNCHS respondent). Authorized

    disclosuresarediscussedinSection8,whilethepreventionof inadvertentdisclosureistreatedinSections9and10.

    Anagentisapersondesignatedbyanagencytoperform,eitherinthecapacityofaFederalemployeeorotherwise,

    activitiesauthorizedbylawandspecifiedinawrittendocumentunderthesupervisionorcontrolofanofficeroremployee

    ofthatagency,andwhohasagreedinwritingtocomplywithallprovisionsoflawthataffecttheactivitiesconductedon

    behalfoftheagency.

    AcollaboratororcollaboratingpartyisonewithwhomNCHShasaformalworkingrelationshipattheinceptionof

    asurveyorproject.Inmostcircumstances,aformalworkingarrangementisdefinedinsuchdocumentsasaMemorandum

    of Understanding (MOU) or InteragencyAgreement (IA), but may also be defined in other appropriate instruments.Although the nature of the working relationship may vary from collaborator to collaborator, the description of that

    relationshipmustbe veryspecificallystatedin whichever instrumentis chosen.Acollaboratormusthaveestablisheda

    formalworkingarrangementwithNCHSattheinitialplanninganddesignstages.Thereafter,thecollaboratormusthave

    tangibleandsignificantinvolvementintheplanning,design,funding,orexecutionofthesurveyorproject. A collaborator

    canbe,butisnotlimitedto,otherFederalagencies,Stategovernments,universities,organizations,colleagues,andothers

    workingoutsideNCHS.

    Consent iswritten,oral,orinferredapprovalbyanNCHSrespondenttoprovidetherequestedinformation.Before

    elicitinginformation,respondentsareclearlyinformedabouttheusestobemadeofdataheorsheisaskedtosupplyand

    thepartieswhowouldreceiveitinidentifiableform.Thisinformationmustbeprovidedinsuchawayastorepresenta

    full exposure of the facts the respondent needs to make an intelligentdecisionconcerning the provision ofpersonal

    informationtoNCHS.

    4.

    Employee

    Responsibilities

    4.1 DivisionandOfficeDirectors

    Eachdivisionandofficedirector intheCenterhasresponsibilityforassuringstaff compliancewithNCHSpolicies

    pertainingtotheconfidentialityof recordsincaseswhereanassuranceofconfidentialityhasbeenoristobegiven.

    4.2 ConfidentialityOfficer

    TheConfidentialityOfficerwillbeavailabletoassisttheCenterDirectorandstaff inavarietyofways,including:

    a. InterpretingDepartmentpoliciespertainingtoconfidentiality;

    b. Assistingemployeesinobtaininginformationonandclarificationofconfidentialitylawandrelatedregulations;

    c. DirectingtheNCHSDisclosureReviewBoard(seeSection9.2) inthereviewofelectronicdataproductsproposed

    forpublicrelease;

    d. Providingorientationfornewemployees,ongoingtrainingforcurrentemployees,andimplementingappropriate

    exitprocedurestodepartingstaff;

    e. Reviewingdatacollectioninstrumentsandprocedures;

    f. Providing guidance in the development of appropriate inter and intraagency agreements, and contractual

    languageforthesharingandcollectionofconfidentialinformation;

    g. ConductingperiodicphysicalinspectionsofNCHSofficestoassurethatrequirementsforthephysicalsecurityof

    confidentialrecordsareobserved(SeeSection7);and

    h. Providing advice regarding appropriate disciplinaryaction thatmay be taken when laws, rules, or regulations

    relatingtoconfidentialityareviolated.

    4.3

    Supervisors

    Responsibilities

    TheSupervisorsResponsibilitiesincludethefollowing:

    a. Supervisors will inform all employees, and subsequently all new employees, of existing NCHS policies and

    proceduresrelatingtothesubjectofconfidentialityandwilldiscusswithsuchemployeestheirresponsibilitiesin

    thisarea.

    b. Supervisorswillberesponsibleforassuringthatallemployeesundertheirjurisdictioncomplywithregulations

    applyingtothedisclosureofofficialinformationthatpermitstheidentificationofindividualsorestablishments.

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    c. Supervisorsshouldrecognizeuniquesituationsthatcallformorethanusualprecautionarymeasuresandshould

    makerecommendationsforimprovement,ifnecessary.

    4.4 IndividualFederalEmployeesResponsibilities

    a. Individualemployeesareexpectedatalltimestofollowtheprinciplesandobeythelaws,rules,andregulations

    thatarecitedorreferencedinthismanual.Whenindoubt,employeesshouldobtainadvicefromthesupervisoror

    theConfidentialityOfficer.

    b. Eachemployee ofNCHSis responsible formaintainingandprotecting atalltimes theconfidentialrecords,inwhateverformormedia,whichareintheemployeespresenceorundertheemployeescontrol.

    c. Toassurethattheemployeeisfullyawareofhisresponsibilities,eachperson,onenteringemploymentinNCHS,

    isgiventheNondisclosureAffidavitfoundinAppendixBtoreadandsign.Theyareaskedtoreasignthisform

    annually.

    4.5 ContractorsandAgentsResponsibilities

    PersonsworkingundercontracttoorwhoareotherwiseconsideredagentsofNCHSaresubjecttothesamelawsand

    regulationsas NCHSemployees.Inaccordancewith theconfidentialityprovisions incorporatedinallNCHScontracts,

    contractors and agents, and contractor employees are expected to observe all Departmental and Centers for Disease

    Control and Prevention (CDC) rules and regulations and NCHS policy relating to official information for which

    confidentialityassuranceshavebeengiven.

    Whenindoubtconcerninganyconfidentialitylaw,regulationorpractice,adviceshouldbeobtainedfromtheNCHSprojectofficerortheNCHSConfidentialityOfficer.

    EachagentandcontractemployeeofNCHSisresponsibleformaintainingandprotectingatalltimestheconfidential

    records,inwhateverformsormedia,thatareintheirpresenceorundertheircontrol.Inaddition,theymustatalltimes

    followtheprinciplesandobeythelaws,rules,andregulationsthatarecitedor referencedin thismanual. Toassurethat

    the agent or contractor employee is fully aware of his responsibilities, each person, on entering on duty, signs a

    Nondisclosure Affidavit (Appendix C),whichspellsouttheparticularsofthelawscoveringtheirconductwhileunder

    contracttoNCHS.

    4.6CollaboratorsResponsibilities

    Althoughconsent will have been obtained from respondents for access to confidential data by collaborators (See

    definitionofcollaboratorinSection3above),itisnonethelessNCHSpolicythatsharingofconfidentialdataoutsidethe

    Center requirespositiveassurances that they will beaccorded the same rigorouscare as they receive within NCHS.Accordingly,collaboratorsarenotpermittedtoreceiveconfidentialdataunlesstheyhaveprovidedsuchassurancesand,

    indoingso,committedthemselvesto followingtheprinciplesandobeyingthelaws,rules,andregulationscitedin this

    manual.Appropriatemodelagreementsareavailableforthispurpose.

    4.7 AdministrativeOfficersResponsibilities

    Eachnewemployeeorcontractorisrequiredtoviewaconfidentialityvideo,signaconfidentialitypledge,andreceive

    documents and material dealing with their responsibilities with respect to confidential information while working at

    NCHS.TheAdministrativeOfficerisresponsibleformakingsurethatpersonsenteringondutyattheCentercomplywith

    allappropriaterequirementsestablishedby theConfidentialityOfficer. Similarly,upondeparture from NCHSemploy-

    ment,staffarerequiredtoundergoawelldefinedexitprocess.TheAdministrativeOfficerisresponsibleforensuringthat

    departingstaffcomplywithallrequirements.

    5.NCHSPoliciesonConsentandAssurancesofConfidentiality

    5.1 Consent

    Obtainingconsentfromindividuals.Consentmaybeobtainedbymeansofasignatureorbyconstruction.Inthefirst

    instance,therespondentmaybeprovidedawrittendescriptionoftheintendedtreatmentofinformationhe/sheisaskedto

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    provideandaskedtosignhis/hername,therebyindicatingpermissiontousethatinformationasdescribed.Insomecases,

    however,he/sheisgiven thisinformationeitherinwritingorverbally. Iftherespondentthensuppliestherequesteddata,

    NCHSconstruesthattherespondentagreestothoseintendedusesandsharingofdatawithpartieshehasreadorbeen

    toldabout.TheCentercanthenmakesuchusesofthedataashavebeendescribedtotherespondent,butnootheruses

    ofthedatamaybemade.Inarrivingatthecontentofastatementofconsent,the ConfidentialityOfficerandtheChairof

    theNCHSResearchEthicsReviewBoard(ERB) cooperateclosely.AllprotocolssubmittedtotheERBarereviewedfor

    conformancewithNCHSconfidentialityrequirements,andthefinal,consentdocumentsmustbeplacedonfilewiththe

    ConfidentialityOfficerpriortouseinthefield.(NOTE:Followingconfidentialityrequirementsdoesnotreleasestafffrom

    therequirementsoftheERB.Obtainingconsentfromanestablishment. Inthecaseofestablishments,theapproachdependspartlyuponwhetherthe

    requestforinformationismadeinapersonalintervieworbymail.

    A. Iftherequestforinformation ismade inpersonby astaffmember oragentofNCHS, the contactpersonfirst

    inquires as to who is authorized to provide the requested data on behalf of the establishment. When such

    authorizedpersonisinformedoftheusestobemadeofthedata,andhe/shethensuppliesthedata,NCHSstaff

    construesthattheestablishmenthasgivenconsentto theusesofdataasspecified.

    B. Whendataaresoughtfromanestablishmentbymail,therequestmaybeaddressedtotheestablishmentitself,to

    the manager of the establishment, or to some other person who, as the Center has previously ascertained, is

    authorizedtoproviderequesteddataonbehalfoftheestablishment.Thelettertransmittingtherequestexplainsthe

    uses tobemade of the data.WhenNCHS staff then receives the requested data from the establishment, itis

    construedthattheestablishmenthasconsentedtothoseusesofwhichithasbeeninformed.

    5.2AssurancesofConfidentiality

    Background. WheneverNCHSrequestsdataconcerningan individualoranestablishment, itisobligatedtoprovide

    certain information and assurances to the supplier of information.Although this is considered a moral obligation by

    NCHS,itisalsostatedorimpliedinboththePublicHealthServiceActandthePrivacyActof1974.ThePublicHealth

    ServiceAct,inSection308(d)statesthatinformationmaynotbeusedforanypurposeotherthanthepurposeforwhich

    it was supplied; therefore, such purposes must be explained to the supplier of information before obtaining the

    informationfromhim/her.ThePrivacyActof1974statesinSection(e)(3)thattheagencyshall:

    Informeachindividualwhomitaskstosupplyinformation,ontheformthatitusestocollecttheinformationorona

    separateformthatcanberetainedby theindividual...

    A. the authority (whether granted by statute, or by executive order of the President) which authorizes thesolicitationoftheinformationandwhetherdisclosureofsuchinformationismandatoryorvoluntary;

    B. theprincipalpurposeorpurposesforwhichtheinformationisintendedtobeused;

    C. intendeddisclosure(ifany)ofidentifiableinformationtootherparties;and

    D. the effectsonhim/her, ifany, ofnotprovidingalloranypartoftherequestedinformation.

    Suchinformationmustbeconsistentwiththeinformationinthedescriptionofthesystemofrecordspublishedinthe

    Federal Register.If any release of any identifiable information is to bemade, then the law requires that consent be

    obtainedinadvanceforthatspecificrelease.ThePublicHealthServiceAct,Section308(d)statesthatsuchinformation

    maynot bepublished or releasedin other form if theparticularestablishment orperson supplyingthe informationor

    describedinit isidentifiableunlesssuchestablishmentorpersonhasconsented(asdeterminedunderregulationsofthe

    Secretary)toitspublicationorreleaseinotherform.ThePrivacyAct(in552A(b)statesthat,withcertainexceptions,an

    individualsrecordmaynotbedisclosedexceptpursuanttoawrittenrequestby,orwiththepriorwrittenconsentofthe

    individualtowhomtherecordpertains.

    Statementofassurances.Thesetofinformationgiventoanyindividualorestablishmentaskedtoprovidedatatothe

    Centermustincludeastatementofassurances.Thismustinclude:

    (1)Thelegalauthorization(s)forsolicitingthedata(inthecaseofNCHS,thePublicHealthServiceAct);

    (2)Thepurposesforwhichthedataarebeingcollectedandthepartieswithwhomidentifiableinformationwillbe

    shared;

    (3)Thevoluntarynatureoftheresponse;

    (4)Theconsequences,if any,to therespondentforfailingtoprovideanypartoftherequesteddata;and

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    (5)AnassurancethattheCenterwillprotectthedataagainstotheruses.

    5Thestatementofassurancesmay becontainedinaletterorbrochurehandedormailedtoa respondentsothat

    he/she receivesit beforeprovidingthe information.Thestatementmay begivenorally toa respondent,but italso

    mustbeprovidedinwrittenform, onpaper, to beretained bytherespondent;theonlyexceptionstothisrequirement

    are: (a) ifa selfadministeredquestionnaire isused,thestatement may be madepart ofthequestionnaire, andno

    separatecopy needbegiventotherespondent,and(b)inthecaseof atelephoneinterview, anoralreadingmay be

    sufficient(see Section5.6).

    Theassuranceofconfidentialityconstitutestheguaranteegiventothedatasupplier thatNCHSwilllimititsusesof

    thedatatothosespecifiedtotherespondentandthatNCHSwillactivelyprotecttheinformationfromanyotherusesbyanyotherparty.

    5.3 Responsibility forFormalAssurancesofConfidentiality

    FormalassurancesofconfidentialitywillbegivenbytheDirectorofNCHSorhisdesignee.Suchauthorityisvested

    intheDirectorof theCenterandtheDirectorofeachof itsdivisionsandoffices.However, incidentalreferencesto the

    assurancesarepermittedincommunicationssignedbyotherstaffmemberssuchassurveymanagersdirectlyinvolved

    with the development and negotiation of such assurances. In view of the complexities involved in confidentiality

    assurancesresultingfromlegislativeandregulatoryrequirements,DivisionandOfficeDirectorsarerequiredtosubmitthe

    confidentialityassurancesrelatingtoeachdatacollectionprogramtothe ConfidentialityOfficerforreviewandapproval.

    ThisapprovalshouldbeobtainedbeforetheRequestforClearancegoestotheNCHSResearchEthicsReviewBoardor

    OMBClearanceOfficer.

    5.4

    Data

    Collected

    Directly

    From

    Individuals

    or

    Establishments

    Wheneverdataaretobecollectedwithapromiseofconfidentiality2 directlyfromindividualsorestablishmentsbyan

    employee, agent, or contractor of NCHS, primarily toaccomplish an NCHS function, the following rules governing

    assurancesandinformationaretobemet:

    1. Includeonthedatacollectioninstrument(whetherelectronicorpaper) inaclearlyvisiblelocationandinclearly

    visible letters the following notice (or words to this effect) of the confidential treatment to be accorded the

    informationintheinstrumentbyanyonewhomayseeit:

    ConfidentialInformation

    Informationcontainedonthisformwhichwouldpermitidentificationof anyindividualorestablish-

    menthasbeencollectedwithaguaranteethatitwillbeheldinstrictconfidence,willbeusedonlyforpurposesstatedinthisstudy,andwillnotbedisclosedorreleasedwithouttheconsentoftheindividual

    or theestablishment inaccordance with Section308(d) of thePublic HealthServiceAct (42U.S.C.

    242m)andtheConfidentialInformationProtectionandStatisticalEfficiencyAct.

    2. Onaletterorotherformthatcanberetainedby theindividualortheestablishment,oronthequestionnaireform

    itselfif itis aselfadministeredquestionnaire,informinclearand simpletermseachindividualorestablishment

    askedtosupplyinformation:

    a. ThatthecollectionoftheinformationisauthorizedbySection306ofthePublicHealthServiceAct(42U.S.C.

    242k);

    b. Ofthepurposeorpurposesforwhichtheinformationistobeused,clearlystatingthattherecordswillbeused

    solelyforstatisticalresearchandreportingpurposes;

    c. Ofintendeddisclosures(ifany)ofidentifiableinformationtootherparties;

    d. Thatparticipationisvoluntaryandtherearenopenaltiesfordecliningtoparticipateinwholeorinpart;ande. Thatinformationwillnotbeusedforanypurposeotherthanstatisticalresearchandreporting,norwillitbe

    sharedin identifiableformwithanyoneotherthannamedagenciesandcollaborators.

    2Intherareinstanceinwhichdataarecollectedwithouta promiseofconfidentiality,permissionto collectthe datamustbegrantedbytheDirector,

    NCHS.

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    When social securitynumber orMedicareclaimnumber (which may incorporate the social securitynumber) are

    collected, respondentsmust,atthepointofcollectionof that information,be informed,inclearandunderstandable

    languageofitemsathroughd.

    5.5DataCollectedFromAnotherOrganization

    WhenevertheCenterarrangestopurchaseorotherwiseobtainfromanotherorganizationdatathatcontainidentifiers

    ofindividualsorestablishments,itwillprovidetothesuppliertheinformationspecifiedinthepreviousitems5.42a,b,

    c, and e. This information will be provided in written form, either in the contract, purchase order, or other writtenstatement.

    5.6 DataCollectedOver theTelephone

    Wheneverdataaretobecollected over the telephone byanemployee,agent,orcontractorofNCHS,primarilyto

    accomplishanNCHSfunction,thefollowingrulesgoverningassurancesand informationaretobemet:

    1. Beforeelicitingsurvey informationfroma respondentinany telephonesurvey, therespondentwillbegiventhe

    followinginformation(thoughnotnecessarilywiththisexactwording)overthetelephone:

    a. Thelawauthorizingcollectionoftheinformation.IfthesurveyisbeingconductedundertheCenterslegal

    authority, the interviewer should say, Thesurvey is being conducted under authorityof thePublic Health

    ServiceAct. Iftherespondentrequeststhespecificlegalcitation,the interviewerwillsaythatitis Volume42oftheU.S.Code,Section242k.

    b. Thepurposeorpurposesfor which theinformationis tobeused, suchas for statisticalresearch onhealth

    problems.

    c. Thatparticipationinthesurveyispurelyvoluntary.

    d. AnypossibledisclosuresofidentifiabledatatobemadeoutsideNCHS.

    e. An assurance that (except for any such disclosures) the confidentiality of all information supplied will be

    carefullyprotected,andnooneotherthanNCHSanditsagentsandanycollaboratorswillhaveaccesstoany

    datathatidentifytherespondents.

    Theexactwordingproposedforinformingrespondentsinanyparticularsurveymayvaryfromthatsuggestedabove,

    butmustbesubmittedforapprovalbytheConfidentialityOfficerpriortotherequestforOMBapproval.

    2. Thetelephoneinterviewermustsignastatementthattheinformationrequired(asindicatedabove)wasgivenorally

    to each respondent. This information shall be given by reading the approved text and answering any of therespondents questions about it before proceeding with the interview. The statement to be signed by each

    interviewermaybeontheformusedtocollectthesurveydata.

    Incomputerassisted telephone interviewingwherethere isnohardcopyquestionnaire,the following procedure

    maybeusedinlieuofhavingtheinterviewersignastatement:Followingthepromptingfortheinterviewertoread

    theprescribedstatementstotherespondent,thecomputerthenaskstheinterviewerwhetherheorshecertifiesthat

    he/shehasreadtotherespondentallthestatements,intheirentirety,containedinitems______through________.

    Ifso,theinterviewerisaskedtotouchY(oranotherappropriatesymbol)foryes,andtoenterhis/herpersonal

    identifiercodeandthedate.Thecomputerthencheckswhetherthesehavebeenenteredcorrectlyand,iftheyhave,

    thecomputermakesthiscertificationapermanentpartoftheinterviewrecord.Iftheyarenotenteredcorrectly,the

    computerwillnotproceedwiththeinterview.

    5.7 RepositoryofAssurances

    A. Acentral repository forthe filingofstatementsof assuranceshasbeenestablishedunder thesupervisionof the

    ConfidentialityOfficer.

    B. Each organizational unit ofNCHS,whichhas givenstatements ofassurances,will forward copies ofall such

    statementstotherepository.Thiswillnormallyincludebut,notbelimitedto,assurancesgivenincontracts,special

    letters,brochures,surveyquestionnaires,andforms.

    C. TheassurancessubmittedtotheConfidentialityOfficerforapprovalwillbefiledintheRepositoryofAssurances

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    asatentativeissuance.Whenallclearanceshavebeenreceivedandfinalprintedcopiesofthesurveyorstudy

    materialshavebeenproduced,acopyofthesematerialsisforwardedtotheRepositorytoreplacethetentative

    materials.

    6. TreatmentofRequestsfor InformationUndertheFreedomofInformationAct

    Whenever a request is received for a specified record3

    concerning a named individual, that request is subject torequirementsoftheFreedomofInformationAct(FOIA). Withcertainexceptions,thislawrequiresthatFederalagencies

    providecopiesofrequestedrecords.Thereare,however,twoimportantexceptionstotherequirementthatusuallyapply

    totheCenter.Theyare(1)personalandmedicalfilesandsimilarfiles,thedisclosureofwhichwouldconstituteaclearly

    unwarrantedinvasionofpersonalprivacyand(2)mattersspecificallyexemptedfromdisclosurebystatute.Inthecaseof

    NCHS, Section 308(d) of the Public Health Service Act specifically exempts personal information from disclosure.

    RequeststoNCHSforrecordsunderFOIA,wherethereisanamedindividual,arenotsubjecttoFOIAwhendataare

    identifiable.

    Policy. If anemployee receivesa request for a record or an item of information that cites the FOIA, he should

    immediatelyreferthisrequesttotheNCHSFreedomofInformationActCoordinatorasresponsemustbemadewithin10

    days.Anyrequestfor informationwherethere isany doubtas towhether it can beprovided shallbe referredto the

    ConfidentialityOfficer.

    7. TheProtectionofRecordsandDataSystems

    Employees ofNCHSareresponsibleforprotectingallconfidential records from pryingeyes, unauthorizedaccess,

    theft,andfromaccidentallossormisplacementduetocarelessness.

    OnthissubjectthePrivacyAct,inSection552a(e)prescribesthateachagencyshall:

    (9) Establishrulesofconductforpersonsinvolvedinthedesign,development,operation,ormaintenanceofany

    systemofrecords,orinmaintaininganyrecord,andinstructeachsuchpersonwithrespecttosuchrulesandthe

    requirementsofthissection,includinganyotherrulesandproceduresadoptedpursuanttothissectionandthe

    penaltiesfornoncompliance;

    (10) Establishappropriateadministrative,technical,andphysicalsafeguardstoinsurethesecurityandconfidentiality

    ofrecordsandtoprotectagainstanyanticipatedthreatsorhazardstotheirsecurityorintegritywhichcould

    resultinsubstantialharm,embarrassment,inconvenience,orunfairnesstoanyindividualonwhominformationismaintained. . . .

    In the case of NCHS, the StaffManual on Confidentiality, taken as a whole, together with other administrative

    practices, fully addresses these requirements. Particular attention is directed to two major aspects: the protection of

    confidentialrecordsandthesecurityofautomateddatasystems.

    7.1PhysicalProtectionofConfidentialRecords

    Absoluteprotection of the recordswould be impossible;nevertheless,all reasonable precautionsmust be taken to

    protectthem.

    ItisthepolicyofNCHSthat:

    A. Confidentialrecordsmustbekeptlockedupatalltimeswhentheyarenotbeingused.Thatis,theymustbekept

    inlockedcabinetsor inlockedroomsafterbusinesshoursandwheneverthepersonsusingthemarenotpresent.Ifrecordsaremaintainedinelectronicform,themediumonwhichthefilesarestored(floppydisks,CDROMS,

    andremovableharddrives)mustalsobekeptinlockedcontainersor, ifmaintainedonacomputer,accesssecured

    byall availablemeans(includingkeyboardlocks,passwords,encryption,officelocks,etc.).Personalcomputers

    3RecordisdefinedintheDepartmentsregulations (45CFRPart 5) asincludingbooks,brochures,punchcards,magneticfiles,papertapes,sound

    recordings, maps, pamphlets,photographs, slides, motion pictures,or other documentary materials...In the caseofNCHS, other examplesof a

    recordwouldbevideos,xrays,andtissueorbloodsamplesaswellaselectronicfilesinwhateverformCDROMS,diskettes,etc.

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    http://www.usdoj.gov/foia/privstat.htmhttp://www.usdoj.gov/foia/privstat.htmhttp://www.usdoj.gov/foia/privstat.htmhttp://squid.law.cornell.edu/cgi-bin/get-cfr.cgi?TITLE=45&PART=5b&SECTION=1&TYPE=TEXThttp://squid.law.cornell.edu/cgi-bin/get-cfr.cgi?TITLE=45&PART=5b&SECTION=1&TYPE=TEXThttp://squid.law.cornell.edu/cgi-bin/get-cfr.cgi?TITLE=45&PART=5b&SECTION=1&TYPE=TEXThttp://squid.law.cornell.edu/cgi-bin/get-cfr.cgi?TITLE=45&PART=5b&SECTION=1&TYPE=TEXThttp://www.usdoj.gov/foia/privstat.htm
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    containingconfidentialrecordsshouldneverbemaintainedinanopen,unsecuredspace.Onlyalimitednumberof

    staff,asauthorizedbytheDivisionorBranchChief,mayhavekeysorothermeansofaccesstosuchcabinetsor

    rooms.

    B. Whenconfidentialrecordsareinuse,whetherbythemselvesorviewedoncomputermonitors,theymustbekept

    outofthesightofpersonsnotauthorizedtoworkwiththerecords.

    C. Exceptasneededforoperationalpurposes,copiesofconfidentialrecords(paperdocuments,electronicfiles,video

    recordings,orrecordsofotherkinds)arenottobemade.Anyduplicatecopiesmadeofconfidentialrecordsareto

    be destroyed as soon as operational requirements permit. Records not otherwise covered by record retention

    regulations(whenindoubt,consulttheNCHS RecordsManagementLiaison) thatarenolongerneededshouldalsobedestroyed.Approvedmeansofdestructionincludeshredding,burning,andmacerating.Shouldreuseof

    electronic media (hard drives, rewriteable compact disks) containing confidential records be contemplated,

    extremecareshouldbetakennottodisposeofinformationinsuchawaythatitcanberecoveredbyunauthorized

    usersof the electronic mediuminvolved.For furtherguidance for the dispositionofpaperand other typesof

    records,consulttheNCHSInformationSystemsSecurityOfficer.

    D. Paper orelectronic recordscontaining personally identifying information such as respondent name, address,or

    socialsecuritynumbershouldbeheldtotheminimumnumberdeemedessentialtoperformtheCentersfunctions,

    kept in ahighlysecuremanner, and kept only so long asneeded tocarry outthosefunctions. A writtenjustification

    formaintainingfileswiththeseitemsmustbesubmittedtoth eConfidentialityOfficer and,ifapproved,access

    restricted to the smallest number of staff consistent with that justification. The justification must include a

    statement specifying the timeperiod afterwhich these itemswill no longer beneeded and provision for their

    subsequentdeletionordestruction.

    E. No record containing direct personal identifiers (name, address, social security or other identifying number,unretouchedvideo, oraudio recording)ofNCHSsurveyrespondentsmaybe electronically sent tooraccessed

    fromanemployeesor contractorsalternateworksiteorremovedfromNCHSofficesexceptas requiredinthe

    conductofdatacollectionactivities. WorkoutsidetheCenter(whetherathomeoratanalternativeworksite)with

    inhousefiles(recordsstrippedofdirectidentifiersbutnotapprovedforpublicuse)mustreceiveapprovalin

    advance. Such applications include all cases where confidential data would be accessed from outside NCHS

    offices and arenot limited toflexiplace requests.The staff member will agreein writingnot todownload the

    contents of confidential files accessed from home or from an alternate work site. Confidential files are not

    approved to be used on laptop computers. Other security requirements as dictated by the NCHS Information

    SystemsSecurityOfficer mustalsobemet.

    F. WhenrecordsaretransferredtotheNationalArchivesandRecordsAdministrationoritsrecordcentersforstorage,

    theircontainersmustbesealed.Thestoragecentermustbeadvisedthatnoonemayhaveaccesstothoserecords

    exceptasauthorizedoverthesignatureofanappropriateofficialofNCHS.Wheredestructionofrecordsatafuture

    date is cited in the NCHS Records Schedule, such destruction of records containing personally identifyinginformationmustbepersonallywitnessedbytheNCHSRecordsManagementLiaison orhis/herdesignee.

    G. When records containing names or other direct identifiers are transmitted between NCHS offices or between

    NCHS and its contractors, they must bepackaged securelyand sent by the most secure and trackable means

    available(e.g.,FedEx,personalmessenger,ordirectlybyNCHSstaff).

    H. ConfidentialrecordsmaynotbereleasedoutsideNCHS(toanotheragency,contractor,orotherparty)unlessthat

    releaseisconsistentwiththeassuranceofconfidentialityunderwhichtheyweregatheredandpositiveevidence

    (appropriate contract language,a memorandum of understanding,or interagency agreement) that the receiving

    partywillprovidethesamelevelofconfidentialityprotectionasthatrequiredofNCHS.Agencystaffandany

    contractorsmustbemadeliabletolegalsanctionsiftheconfidentialitypledgeshouldbeviolated,andrecordsmust

    bemaintainedby theProgramor Divisionunderwhose direction theinformationwas collected listingallfiles

    released(towhomandunderwhatagreement)containingconfidentialinformation.Suchrecordsshouldcoverfiles

    madeavailabletootherdivisionswithinNCHSaswellasoutsidetheCenter.

    7.2 AutomatedDataProcessingSystemsSecurityGeneral

    InachievingthegoalsofthePrivacyActof1974,policyandguidancedocumentshavepointedtotheimportantarea

    ofautomaticdataprocessing(ADP)inestablishingsafeguardstoensurethesecurityandintegrityofrecords.Identifiable

    NCHSdata areconsidered highly sensitive.TheDHHSAutomated Information SystemsSecurity ProgramManual is

    a Departmental directive which provides practices and procedures intended to carry out OMB Circular A130,

    regulatesthesecurityofFederalautomatedinformationresources.Appendix 3 oftheCirculardefinesadequatesecurity

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    as security commensuratewiththe risk andmagnitude of theharm resultingfrom the loss, misuse,or unauthorized

    accesstoormodification ofinformation.All technical,personnel, administrative,environmental, andtelecommunica-

    tions safeguards necessary toprotect the confidentiality, integrity, andavailabilityof NCHSdatamust be inplace.

    OMBCircularNo.A123,ManagementAccountabilityandControlandtheFederalManagersFinancialIntegrityAct

    (FMFIA), also are applicable. The FMFIAcarries both fine and imprisonment penalties for misuse of Government

    resources. These laws are applicable todata collected byNCHS under308(d). NCHS staff, prior todevelopmentof

    contractsorprojects,mustconsultwiththe InformationSystemsSecurityOfficer toensurecompliancewithapplicable

    lawsandregulations.

    AlthoughtheSystemManageristheFederalofficialwhoislegallyresponsibleforthesystemofrecordssubjecttothePrivacyAct,allotherswhocontrol,handle,orusethedataalsoshareresponsibilityforthesecurityandintegrityofthe

    records.TheseincludetheNCHS TopSecretCoordinatorandprogram TopSecretAdministrators,ADPSystemsSecurity

    Officer,systemsanalysts,programmers,datapreparationpersonnel,andADPsystemsusers.Contractorswhodealwith

    data that come underthe provisions ofthe Public Health ServiceAct and/or the PrivacyAct are subject tothe same

    regulationsasareDHHSemployees.

    DocumentControl. While not inuse,alldocumentationcontaining or relatingto identifiableinformationmust be

    storedinsuchamannerastopreventdisclosure.Thisincludes:

    A. Documentationoffunctionalandprogramspecifications;

    B. Documentationillustratingrecordlayoutsoffilescontainingpersonaldata;

    C. Documentationcontainingdescriptionsofinternalcontrolsandaudittechniquesemployedwithinthesystem;

    D. Anyotherhardcopyassociatedwithconfidentialinformation;

    E. Computerprogramlistingsandsourcedecks;

    F. Documentationproductionrunprocedures;and

    G. Documentationrelatedtostatisticaldisclosurelimitationproceduresanddisclosurereview.

    AllADPsystemsusersshouldfamiliarizethemselveswiththecontentsoftheDHHSAutomatedInformationSystems

    SecurityManual.Centerpersonnelarerequiredtocomplywiththeregulationsinthismanual.

    8. AuthorizedDisclosures

    GoverningPrinciples.NCHSactionisgovernedorconstrainedbyfourprinciples:

    A. Theactionleadingtodisclosuremustbeclearlywithintherelevantlawsandregulations,andifthereisanydoubt,

    theadviceoflegalcounselshouldbesought.B. TheCentermustalwaysbecandidwithrespondents,makingitclearwhowillhaveaccesstoindividualresponses

    andforwhat(general)purposethedataarebeingcollected.

    C. Anessentialrequirementforreleaseofdatais theconsentoftherespondent.

    D. ThereleaseofconfidentialdatamustbecarriedoutunderagreementasdescribedinSection8.3.

    8.1 Disclosureto theParentLocatorService

    With but one exception, no informationabouta person orestablishment may bedisclosed toanyone without the

    informedconsentofthepersonorestablishmentsupplyingtheinformationordescribedinit.

    Thatsingleexceptioniscontainedinthe1974AmendmentstotheSocialSecurityActrelatingtotheParentLocator

    Service(42U.S.C.653)whichreadsinpart:

    (b)Uponrequest,filedinaccordancewithSubsection(d),ofanyauthorizedperson(asdefinedinSubsection(c))forthemostrecentaddressandplaceofemploymentofanyabsentparent,theSecretaryshall,notwithstandingany

    otherprovision of law, provide through the Parent Locator Service such information to such person, if such

    information(l)is containedinanyfilesorrecordsmaintainedby theSecretaryorbytheDepartmentof Health,

    Education,and Welfare. . . .

    ItseemsunlikelythatanyinformationinthefilesofNCHSwouldeverbeusefultotheParentLocatorServicein

    locating absent parents. However, if any such request were ever received, it should be referred immediately to the

    ConfidentialityOfficer,whowilldecidetheactiontobetaken.

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    http://www.whitehouse.gov/omb/circulars/a123/a123.htmlhttp://www.whitehouse.gov/omb/circulars/a123/a123.htmlhttp://www.dod.mil/comptroller/fmfia.htmlhttp://www.dod.mil/comptroller/fmfia.htmlhttp://www.dod.mil/comptroller/fmfia.htmlhttp://irm.cit.nih.gov/policy/aissp.htmlhttp://irm.cit.nih.gov/policy/aissp.htmlhttp://irm.cit.nih.gov/policy/aissp.htmlhttp://irm.cit.nih.gov/policy/aissp.htmlhttp://www4.law.cornell.edu/uscode/42/653.htmlhttp://www4.law.cornell.edu/uscode/42/653.htmlhttp://www4.law.cornell.edu/uscode/42/653.htmlhttp://www4.law.cornell.edu/uscode/42/653.htmlhttp://irm.cit.nih.gov/policy/aissp.htmlhttp://www.dod.mil/comptroller/fmfia.htmlhttp://irm.cit.nih.gov/policy/aissp.htmlhttp://www.dod.mil/comptroller/fmfia.htmlhttp://www.whitehouse.gov/omb/circulars/a123/a123.html
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    interdepartmental transfer of data may be done only with the express approval of the Director of NCHS under an

    agreementasdescribedinSection8.4.Inaddition,NCHSwouldnottransferanyconfidentialdatatoanotherdepartment

    withoutpositiveassurance that thedatawillbeusedonlyfor theauthorizedpurposeand that theconfidentialityof the

    datawillbeprotectedquiteaseffectivelyintheotherorganizationasitwouldbebyNCHS.NCHSreservestherightnot

    totransferconfidentialdata toanyoneif it isnotconvinced thatthosedatawillbehandledappropriately.

    8.6

    Special

    Cooperative

    or

    Contractual

    Arrangements

    NCHS may be a party to any of several types of arrangements in which the Center is but one of two or moreorganizations that are collecting, processing, or using data under a joint or cooperative agreement. These types of

    situationsarenotdiscussedindetailinthismanual,butthreeprominentclassesofcasesareidentified:

    A. Aspecialsituationprevailsin the VitalStatisticsCooperativeProgram,wheretheStateisthecollectorunderits

    own law. The Center uses the data under a contractual arrangement with the State, which fills the role of

    respondentinthiscontext.TheCenterabidesbythetermsofthecontracts,althoughitcanexercisenocontrolover

    how the Statemanages other confidentiality aspects of its documents. Under the terms of the Statecontracts,

    NCHSwillnotpermitaccesstoindividualdocumentsthatmaybeinitspossessionforcodingpurposes;norwill

    NCHSgivethekey(certificatenumber)toindividualcertificatestoanyonewithouttheexpresswrittenconsent

    oftheState(registrationarea).Underspecialarrangements,NCHSmakesavailabletothepublicmicrodatafiles

    containingpersonrecordinformation.

    B. Contractualarrangementsexistinwhichanotherpersonororganizationeither(1)providesaservicesuchasfield

    collectiontoNCHS,or(2)undertakesanalysisofdataprovidedbyNCHSand,ineithercase,hasaccessanddefactocontrolofmicrodata.(SeeAppendix Aforconfidentialityrequirementsinsuchcontracts.)

    C. Other instruments that legally obligate other parties to NCHS nondisclosure rules and obligations include

    professional service contracts, task orders, intergovernmental personnel act (IPA) appointments, unfunded

    memoranda ofagreement, interagency, andintraagency confidentiality agreements.If notalreadyincluded, the

    languagecontainedinAppendixAmustbemadepartofallsuchdocuments.

    Certification(NCHS Confidentiality Pledge)must be includedwithin these documentsindicating that theparty or

    partiesreceivingidentifiableNCHSdataunderstandtheirobligationtoabidebyallNCHSru lesandregulations.Specific

    wordingforeachdocumentofthistypeshouldbedevelopedinconsultationwiththeNCHS ConfidentialityOfficerwho

    must,alongwiththeNCHSDirector,approvethefinalwording.

    9.

    Avoiding

    Inadvertent

    Disclosures

    Through

    Release

    of

    Microdata

    ItisCenterpolicytomakeitsfilesonindividualelementarydataunitswidelyavailabletothescientificcommunity

    sothatadditionalanalysescanbemadeofthesedataforthecountrysbenefit.Thescientificcommunityhasshowngreat

    interest insuchfiles,andmanyrequestsfortheCenterselectronicfilesarereceivedeachyear.

    9.1

    Problem

    A microdatafileconsistsofindividualrecordseachcontainingvaluesofvariablesforasinglepersonorestablishment.

    Evenwhenallpersonalidentifiersareremoved,alargeamountofinformationremains,andthisinformationmayidentify

    NCHSrespondentsto apersonwhohasaccessto that informationfromanothersource.Forexample,if filedescriptors

    indicatethattherespondentisaPh.D.inthe3034yearsagegroupwhoreportshis/herraceaswhiteandlivesinthe

    Northeastsectionofthecountry,therespondentisnotidentifiable.If,however,thefileindicatesthathisageis31,thathe

    ismarriedtoa42yearoldwomanwhoreportsherraceasAsian,hasthreechildren,andlivesinLitchfieldCounty,Conn.,therespondentmaynowbeidentifieduniquely,andallinformationinthefileabouthimandhisfamilywouldbedisclosed

    toanyonewithaccesstothefile(whocouldthenidentifythepersonfromthegivensetofcharacteristicsorbymatching

    thisinformationtothatcontainedinanotherfilecontainingtherespondentsname).Theplaceofresidence,especially

    whenitisnotaheavilypopulatedarea,isparticularlyusefulintheidentificationprocess.Moreover, if it isknownthata

    particular person or establishment has been selected in the sample, chances are much better that the person or

    establishmentcan beidentified. Insuchcases, informationmaybeknown toa potential intruderwho can beusedto

    establishidentity.

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    Itshouldberecognizedthattheinformationgainedbyanintruderneednotbe exact torepresentadisclosureifit

    pertainstoanidentifiedindividual. Tables(seeSection10),generatedusingmicrodatafiles,shouldtakeintoaccount

    thatitmaybepossibletoassociaterangesofvaluesofcertainvariables(e.g.,income,age)withotherinformation.This

    is particularly applicable to files containing establishment data. In addition, it may be possible to use certain other

    informationcontainedinthemicrodatafiletoidentifyanindividualorestablishment.Amoredetaileddiscussionofthese

    pointsisfoundinSection10.1.

    ThelowratiosamplethattheCenterusesinitssurveyswouldusuallyfrustrateapersonwhoistryingtolocatea

    known individual in the Centerssurvey files. From time to time,however, an individual orestablishment may have

    characteristicsrarelyencounteredin thepopulationfromwhicha sampleisdrawn.Theonlyabsolutelysurewaytoavoiddisclosurethroughmicrodatafilesis torefraincompletelyfromreleasingany

    microdata files,but this would deprive theNationofagreat deal ofveryimportanthealth research.It is theCenters

    policy to release microdata files for purposesofstatistical researchonly when the risk ofdisclosure is judged tobe

    extremelylow.Inordertomakesuchjudgments,theCenterhasestablisheda DisclosureReviewBoard(DRB)which

    meets regularly to consider proposals for public release of microdata files and makes recommendations to the

    ConfidentialityOfficer.

    Allmicrodatafilesintendedforpublicreleasemustbe submittedforreviewby theNCHSDRB.

    9.2Rules

    Thefollowing rules apply toall files releasedby NCHSthat containany informationabout individual personsor

    establishments,exceptwherethesupplierofinformationwastold,priortohisgivingtheinformation,thattheinformationwouldbemadepublic:

    A. Beforeanynewor revisedmicrodata files arepublished, they, togetherwiththeir full documentation, must be

    approvedforpublicationbyth eConfidentialityOfficerwhowillrelyuponassistancefromtheNCHSDisclosure

    ReviewBoardinreachingdecisions.

    B. Thefilemustnotcontainanydetailedinformationaboutthesubjectthatcouldfacilitateidentificationand

    that is not essential for research purposes (e.g., exact date of the subjects birth, excessive detail for

    occupation,extremevaluesofincomeandage,detailedraceorethnicityforsmallandhighlyvisiblegroups,

    and other characteristics that would make an individual or establishment easier to identify). It is

    recommendedthatthefollowingbeconsultedconcerningpossibletechniquesthatwouldpermitthemaximum

    amountofinformationtobereleasedconsistentwithsoundprinciplesofstatisticaldisclosurelimitation:The

    ConfidentialityandDataAccessCommitteesChecklistonDisclosurePotentialofDataandStatisticalPolicy

    Working

    Paper

    22,

    Report

    on

    Statistical

    Disclosure

    Limitation

    Methodology.

    Office of Information andRegulatoryAffairs,OfficeofManagementandBudget.

    C. Geographicplacesthathavefewerthan100,000peoplearenottobeidentifiedonthefile.Dependinguponthe

    statisticalstructureof afileandothercircumstances,ahigherfiguremaybeemployed.Itistheresponsibilityof

    theprogramproposingthedatareleasetodeterminethedisclosureriskassociatedwiththeproposedminimumsize

    ofgeographicareastobeidentified.

    D. Characteristicsofanareaarenottoappearonthefileiftheywoulduniquelyidentifyanareaoflessthan100,000

    people(e.g.,avariabledescribingthesizeofametropolitanareainwhicharespondentwasinterviewedproviding

    foracategoryoflessthan100,000inafilewherearegionisalsoprovided).

    E. Informationonthedrawingofthesamplethatmightassistinidentifyingarespondentmustnotbereleasedoutside

    theCenter.Thus,theidentitiesofprimarysamplingunits(PSUs)arenottobemadeavailableoutsidetheCenter

    exceptinlimitedcircumstancesandasapprovedbythe ConfidentialityOfficer.Whensuchcircumstancesrequire

    thedisclosureoftheidentityofareasinwhichdatacollectionactivitiestakeplace,thesurveymanagermustensure

    thatallinformationforthissurveyproposedforreleasetakeintoaccountthegreaterriskofidentificationbecauseofthisexception.ThedecisionastowhetherPSUidentitiesaretobemadepublicshouldbemadebeforedataare

    collectedandplansfordatareleasefinalized.

    Thissection hasdescribedprocedures fordisclosure review andprotection of microdata files.Any tabulations or

    statisticalmeasuresbaseduponfilessopreparedandapprovedforpublicreleasebytheNCHSConfidentialityOfficer

    wouldmeetNCHSrequirementsfordisclosureprotectionand,alongwiththemicrodata,canbereleasedtothepublic.In

    othercases,wheretabulationsarebasedupondatainaformnotapprovedforpublicuse,proceduresinthefollowing

    sectionmustbefollowed.

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    9.3 RestrictedAccess toMicrodataFilesWith IdentifiableData

    Undercertaincircumstances,accesstomicrodatafilescontaininghighlevelsofdetailsuchasdescribedin9.2B,C,

    orD,maybegrantedtoresearchersintheNCHSResearchDataCenter(RDC)orbymeansoftheNCHSRemoteData

    Access System. In the RDC, analytical manipulation of elements of confidential files not released to the public is

    permitted.Filescontainnonames,addresses,orotherdirectidentifiers.Becausetheremaininginformationwouldrequire

    complex manipulation with other informationnot permitted inoraccessible from the RDC inorder to reidentifyan

    NCHSrespondent, theresearcherhas,ineffect,noaccesstoidentifiableinformation.Nevertheless,no statisticaloutput

    can be removed from the RDC withoutbeingsubjected tostatisticaldisclosure analysisbyRDC staff, and access to

    informationwithintheRDCishighlyrestricted.Requests for tabulations may also be submitted electronically. No direct access to confidential files is permitted,

    however,andonlythosetabulationsthathavebeensubjecttostatisticaldisclosureanalysisaretransmittedbacktothe

    requestor.

    10. AvoidingInadvertentDisclosuresinPublishedTabularData

    Theprevious sectionconsidered detailedprocedures fordisclosure review andprotection of microdata files made

    availableforpublicuse.AnytabulationsorcalculationsbasedupondatasopreparedandapprovedwouldmeetNCHS

    requirementsfordisclosureprotectionand,alongwiththemicrodata,canbereleasedtothepublic.Whereatabulationis

    basedupondatain aformnotapprovedforpublicuse,the followingproceduresmustbefollowed.

    10.1

    Types

    of

    Disclosure

    Centerpolicyrecognizesandattemptstodealwithseveralclassesofinformationdisclosure:

    A. Exactversusapproximatedisclosures.Exactdisclosureis thedisclosureofaspecificcharacteristic,suchasrace,

    sex, or a particular pathological condition. Approximate disclosure is the disclosure that a subject has a

    characteristicthatfallswithinacertainrangeofpossibilities,suchasbeingbetween45and55yearsofageor

    having an income between $15,000 and $25,000. An approximate disclosure may in a given situation be

    consideredharmlessbecauseofitsindefinitenature.

    B. Probability-basedversuscertaintydisclosures.Datainatablemayindicatethatmembersofagivenpopulation

    segmenthavean80percentchanceofhavingacertaincharacteristic;thiswouldbeaprobabilitybaseddisclosure

    as opposed to a certainty disclosure of information on given individuals. In a sense, every published table

    containingdataorestimatesofdescriptorsofaspecificpopulationgroupprovidesprobabilitybaseddisclosureson

    membersofthatgroup,andonlyinunusualcircumstancescouldanysuchdisclosurebeconsideredunacceptable.

    Itispossiblethatasituationcouldariseinwhichdataintendedforpublicationwouldrevealthatahighlyspecific

    group had an extremely high probability of having a given sensitive characteristic; in such a case the

    probabilitybaseddisclosureperhapsshouldnotbepublished.

    C. Internalversusexternaldisclosures.Internaldisclosuresarethosethatresultcompletelyfromdatapublishedfrom

    oneparticularstudy.Externaldisclosuresoccurwhenoutsideinformationisbroughttobearuponthestudydatato

    createdisclosures.Thispossibilitymustberecognizedinanydisclosureanalysis.

    10.2Problem

    In an effort to make available to the public a full set of information on a given subject, statisticians mayand

    sometimes dopresent so much detail in published tabulations that they accidentally reveal confidential information

    aboutparticularstudysubjects.When completecountdataarebeingtabulated*thismayhappeninthefollowingways:

    1. All casesin lineyi ofa statisticaltable fall inthecell incolumnxi.We thenknow that any individual inthepopulationwithcharacteristicyi alsohascharacteristicxi.

    2. Cellxiyigivesthetotalincomeofallindividualswithcharacteristicsxiandyi. Ifthereareonlytwoindividuals,a

    andb, inthepopulationwiththatcombinationofcharacteristics,thena,knowinghis/herownincome,willbeable

    todeterminebsincomebysimplesubtraction,and bwillalsobeabletodetermineasincome.

    *Aswhenallcases in a givenstratumhavebeenincluded in asample or allvitaleventsaretabulated.

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    Inaddition,whenestablishmentdataareinvolved:

    1. Atablegivesthetotalannualreceiptsforallfivenursinghomesincountym.However,nursinghome aismuch

    largerthanalltherestcombined;itaccounts,infact,forthreefourthsofallnursinghomereceiptsinthecounty.

    Knowingthecountytotal,themanagerofnursinghomeaisabletocalculatetheincomesoftheotherfourhomes,

    atleastwithinsomefairlynarrowlimits.

    2. Ametropolitanstatisticalarea(MSA)containstwocounties,aandb.Fourhospitalsarelocatedincountyaand

    onlyoneincounty b.Astatisticalreportispublished,givingconfidentialhospitaldatatotaledforeachSMSA.

    Anotherreportispublishedwithconfidentialdataonhospitalsbycounty,butonlyforcountieswiththreeormore

    hospitals. Using the two reports, one can subtract the data for county a

    from the SMSA data, deriving theconfidentialdataforthelonehospitalincountyb.

    Theseexamplesimplytheexistenceofseveralgeneraltypesofsituationsinwhichstatisticaldisclosuremayoccur. An

    additional possibilitymay be found ina groupof threeormore tables ofsubsets of a givenpopulation from which

    disclosuresarepossiblethroughthesolutionofsimultaneousequations.CenterguidelinesassetforthinSection10.3take

    intoaccounttheseveralpossibledisclosuresituations.

    10.3 SpecialGuidelines forAvoidingDisclosure

    Exceptwhereotherwiseindicated,thefollowingguidelinesapplytoallCenterpublicationsofstatistics:

    A. Innotableshouldallcasesofanylineorcolumnbefoundina singlecell.

    B. Innocaseshouldthetotalfigurefora lineor columnofacrosstabulationbelessthanfiveunweightedcases.C. Innocaseshoulda quantityfigurebebaseduponfewerthanfiveunweightedcases.

    D. Innocaseshouldaquantityfigurebepublishedifonecasecontributesadisproportionateamounttothetotal.A

    minimumpercentagefigureshouldbeadoptedforthispurposeandthisfigureshouldnotbepubliclyreleased.

    E. Inno case should dataonan identifiable case,norany ofthekindsof data listed inpreceding itemsAD,be

    derivablethroughsubtractionorothercalculationfromthecombinationoftablespublishedonagivenstudy.

    F. DatapublishedbyNCHSshouldneverpermitdisclosurewhenusedincombinationwithotherknowndata.

    Reportwritersaretofollowtheseguidelines.Itistheresponsibilityofallbranchchiefstoseethattheseguidelinesare

    followed.Inapplyingthem,branchchiefsarenotrequiredtoconsultwiththeNCHSConfidentialityOfficer.However, if

    aguidelineappearsunreasonableinagivensituation,approvalforaspecialexceptionshouldberequestedfromtheNCHS

    ConfidentialityOfficer.

    Aspecificexceptionnotrequiringspecialapprovalappliesinthefieldofvitalstatistics.Ithasbeenalongstanding

    traditioninthefieldofvitalstatisticsnottosuppresssmallfrequencycellsinthetabulationandpresentationofdata.For

    example,ithasbeenconsideredimportanttoknowthatthereweretwodeathsfromrabiesinRioArribaCounty,NewMexico,inagivenyear,orthattherewereonlyoneinfantdeathandtwofetaldeathsinAitkinCounty,NewMexico.

    Public release of such tabular data is consented to by data providers and is in the interest ofpublic health. Special

    proceduresforthereleaseofmicrodatawithlowlevelsofgeographyand/orexactdateofavitaleventareinplaceandare

    describedathttp://www.cdc.gov/nchs/nvss.htm.

    10.4

    Evaluating

    a

    Disclosure

    Problem

    Theremaybemitigatingcircumstancesinagivensituationthatmaymakeitacceptabletopublishdatathat,strictly

    speaking,couldresultindisclosures.Suchcircumstancescouldprovidegroundsforrequestingthespecialexception

    tothepreviouslynotedrules:

    A. Whendatainastudyarebaseduponasmallfractionsample,forexample,lessthan10percentoftheuniverse,it

    mightgenerallybeassumedthatdisclosurewillnotoccurthroughpublishedtabulations.However,therecouldbeexceptions.Somuchdetailmaybepresentedthatanindividualuniqueinthepopulationisidentifiedthroughthe

    tables ora member of the sample may find himself/herself and others in the data.The usualrules precluding

    publicationofsampleestimatesthatdonothaveareasonablysmallrelativesamplingerrorshouldpreventany

    disclosuresfromoccurringintabulationsfromsampledata.Thisdoesnotabsolvethereportwriterfromreviewing

    tabulationsusingtheprinciplespresentedinthissection.

    B. The existence oferrors orimputations in the data brings some small reduction in the likelihood ofdisclosure

    throughtablepublication.

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    C. Incompletenessofreporting,whichoftenoccursevenwherestudiesaresupposedtoinclude100percentofagiven

    groupin thepopulation,alsoreducesthecertaintyofanydisclosuretakingplacethroughpublicationofdata.

    D. In some instances the danger of disclosure might be mitigated by the fact that the data in question have no

    sensitivity. They may already have appeared in a published directory, or th