Document qMaNYpw1K9r8KDNbOOd4JMk5

,* Angus S. King, Jr. Governor STATE OF MAINE DEPARTMENT OF HUMAN SERVICES AUGUSTA, MAINE 04333 Kevin W. Concannon Commissioner April 25, 1995 Hasmukh Shah, Ph.D., D.A.B.T. Manager, Vinyl Chloride Panel Chemical Manufacturers Association 2501 M Street NW Washington, D.C. 20037 19^ i/i ^ /W 7 Dear Dr. Shah: We have received your request for permission to transfer to Maine death certificates related to the cohort mortality study of vinyl chloride workers from ENSR Health Sciences to Applied Epidemiology Inc. Those requesting restricted data from the Office of Data, Research, and Vital Statistics (ODRVS) are now required to complete an application form and sign a disclosure agreement prior to the release of any information. Since I do not find an application related to this study in our files, I must ask you to complete the enclosed form and return it to us, together with a disclosure agreement signed by Dr. Kenneth Mundt at AEI. When I receive these documents, I will grant the requested permission to transfer the Maine records to AEI. Please feel free to call me at (207) 624-5464 if you have any questions. Sincerely, Ellen Naor, State Registrar of Vital Statistics EN:sw R&S151251 Office of Data, Research, and Vita] Statistics, 35 Anthony Avenue State House Station #11, Augusta, Maine 04333-0011 Tel: (207)624-5445; Vital Records (207)287-3181 MAINE DEPARTMENT OF HUMAN SERVICES OFFICE OF DATA, RESEARCH, AND VITAL STATISTICS Applicationfor Release ofRestricted Vital Statistics Data Title of Study or Program: 1. Principal Investigator or Program Director: Name_______________________________________________________ Title________________________________________________________ Organization_________________________________________________ Address_____________________________________________________ 2. Contact person: Name_______________________________________________________ Telephone No. FAX No. 3. Purpose of study or program, including statutory authority, if applicable: 4. Type of recordsrequested: ____ deaths ____ births ____ fetal deaths ____ other - specify: 5. Form of recordsrequested: _____photocopies - certified ____ photocopies - noncertified computer listing ____ computer tape; specifications: other - specify: Date reviewed: Approved: Yes By: State Registrar No $ Continuing request? Approval valid until Estimate R 4/95 [appli.vs] R&S151252 *f 6. Will you supply identifying information to be used to select the records of interest? ____ Yes _____ No If yes, what information? If not, how is the general group of records you are requesting to be selected? 7. Approximate number of records requested: 8. If your request calls for the release of data on an ongoing basis, how often will you need the data supplied, and over how long a period oftime? This application is validfor up to threeyearsfor the specific uses detailed herein. 9. Is this request based on information received from the National Death Index (NDI)? ____ Yes _____ No It is preferred that requests based on NDI searches be subnutted using the NDI Death Certificate Request Form, accompanied by the coverpage andpage 3 ofthe NDIApplication Form. Afull copy ofthe NDIApplication Form may be attached to this request in lieu of responses to questions 10 and 11 below. R&S151253 R4/9S [appli.vs] 2 '* 10. Summary of study/program protocol. Please be as succinct as possible; your complete study protocol or program and detailed descriptions of your project and background are not necessary. a. Description of health or medical problem addressed or administrative purpose served by the program, demonstrating that data requested are essential, and stating primary study or program objectives and hypotheses to be tested, if applicable. b. Methodology; include justification for contact with individuals named on vital records and attach copies of contact letters and consent forms if applicable. c. Description of any data files that will be linked with the vital records data, demonstrating that such linkage is essential for the stated purpose. R&S 151254 R4/95 [appli.vs] 3 d. Analysis plan, if applicable, indicating how data will be used and level of aggregation. e. Description of whether, and if so, to whom restricted data will be released, demonstrating that such release is related to stated purpose. f. Procedures for maintaining confidentiality and security of restricted data received on or through the use of vital records. g. Procedures and timetable for disposition of any vital records received. 11. Attach copy ofDisclosure Agreement, signed by the Principal Investigator, Program Director, or other individual responsible for conformance to standards for release of restricted data. R4/9S [APPLI.VS] 4 R&S151255 MAINE DEPARTMENT OF HUMAN SERVICES OFFICE OF DATA, RESEARCH, AND VITAL STATISTICS Disclosure Agreement As the official or principal investigator of the program or research study named on this application, which involves the use of vital statistics data, I agree to abide by the provisions of M.R.S.A. Title 22, Sec. 2706 and 10-146 CMR 8. I will take all steps necessary to ensure that all those involved with the specified program or research project also abide by the provisions of this Disclosure Agreement, and that the data received are not used for any purpose other than that specified in the Application for Release of Restricted Vital Statistics Data. I agree that the vital statistics information will not be used in a manner which will identify any individual in any results, presentations, or reports produced by the investigation, study or project, or for administrative purposes other than those specified in this application; that vital statistics data released for statistical research use will not be used for administrative, legal or other nonstatistical purposes which may directly affect particular individuals as a result of their identification in the study; that vital statistics data will be made in a manner that will protect their confidentiality; and that disposition of restricted vital statistics data will be made in a manner that will not permit unauthorized disclosure. This agreement of non-disclosure applies to all forms of personal communication, as well as to published results, presentations and reports. The undersigned is authorized to execute this agreement. Principal Investigator, Program Director, or Other Responsible Individual: Signature:Date: Printed Name and Title:_____________________________________________ Organization:______________________________________________________ Title of Program or Study:___________________________________________ R&S151256 R4/95 [appli.vs] Angus S. King, Jr. Governor STATE OF MAINE DEPARTMENT OF HUMAN SERVICES AUGUSTA, MAINE 04333 Kevin W. Conaumon Corvrduioeier OFFICE OF DATA, RESEARCH, AND VITAL STATISTICS FEES FOR RELEASE OF RESTRICTED VITAL STATISTICS DATA VITAL RECORDS CERTIFICATES $10.00 - Record search and certified copy of record. $ 6.00 - Record search and non-certified copy of record. The fees are for each search conducted whether or not the record is located, regardless of whether or not the presumed record number is provided by the requestor. The applicable fees must be paid in advance with a check made payable to Treasurer, State of Maine. DATA TAPES AND DISKETTES Requests for data will be billed according to the amount of staff time required (approximately $30 per hour), amount of cpu time needed ($20 per minute), number of tapes or diskettes required ($20/$2.50), and microcpmputer use ($5.00 per hour). The requestor will be notified ofthe estimated cost of the desired product; agreement for payment must be secured prior to preparation ofthe information requested. A bill will be sent with the product. If the request is from a state agency outside the Department of Human Services, the account and activity numbers must be provided so that charges can be made. Written authorization by the requestor is required for job estimates over $500. Any revisions to the original request which result in increasing the estimate will require another written authorization. R & s 151257 R4/95 [appli.vs] Office of Data, Research, and Vital Statistics, 35 Anthony Avenue State House Station #11, Augusta, Maine 04333-0011 Tel: (207)624-5445; Vital Records (207)287-3181 r EN:sw (ATE OF MAINE |T OF HUMAN SERVICES STA, MAINE 04333 Kevin W. Concuwon Commissioner April 25,1995 fr.u & ) transfe: lealthSc lort irch, and Vital Statistics (ODRVS) are now required to ;ment prior to the release of any information. tudy in our files, I must ask you to complete the ire agreement signed by Dr. Kenneth Mundt at AEI. d permission to transfer the Maine records to AEI. i have any questions. dy, Yk-o aor, State Registrar al Statistics Office of Data, Research, and Vital Statistics, 35 Anthony Avenue State House Station #11, Augusta, Maine 04333-0011 Tel: (207)624-5445; Vital Records (207)287-3181 R&S151259 rhat fefigW ( Information contained in vital records births, deaths, rand divorces-la used for historical study, genearlogic research, administrative purposes and statistical refsearch as wen as for individual needs. Records that do not [contain Information which Is confidential by law are availfablatotha general public without restriction. ^Records'containing confidential Information are available Jfar general use only If they do not Identify individuals. |Aggregated statistical data are also available for general use. f Records which contain confidential Information and Identiffying Information, however, are restricted to those with a dlr|ect and legitimate Interest in the record, such as the person fnamed on the record and related Individuals. Government |agendes and those conducting statistical research also may Ibe allowed access to restricted data for certain approved ^administrative or scientific purposes. :r>t. ,tj. - - ^Thls pamphlet Introduces administrative and statistical ^research users to the procedures for obtaining release of f restricted vital statistics data. Excerpts from the rule govanting such release are printed inside this folder for ready preference. Who- jW>. 1 Administrative Users Federal or State Agencies, Maine municipal governments ____' and Maine public school districts may be allowed access to ;'! restricted data If essential to their conduct of specific official 9If dudes. .The official responsiblefor the program must proI r\ /' vide written assurances that the use, storage and dlsposi**ff *** record* will maintain their confidentiality, and I y-i . that the data will not be used for any other purposes. I Statistical Research Users ` fi Individuals and organizations may have access to restricted data Ifthey are conducting health, medical or social re- '`--f1' aearoh which has potential for reducing morbidity and morh.Vc tality within Maine, for furthering scientific understanding of v .' disease processes, or for improving health and social services. The person in charge of the research must provide written assurances that the use, storage and disposition of . the records will maintain their confidentiality, and that the .. data will not be used for any other purposes. HOW: - Complete the "Application for Release or Restricted Vital Statistics Data," obtained from the Office of Data, Research, and Vital Statistics. The following Informa tion must be supplied about your program or research study, demonstrating that the restricted data you are re questing are essential for conduct of the agency's officidal duties or for conduct of the research: * Purpose for which restricted data wOt be used. * Planned contact with the person named on the record, family members, or other Individuals on the basis of vital statistics data. * Planned linkage with other data within the requesting organization. * How and to whom restricted data wilt be released. Specify, as part of the application, what procedures you will use to maintain the security of the restricted data; the procedures and time table for their final disposition must also be specified. - Include written assurances by a responsible Individual In the organization that the restricted data will not be used for any purposes other than those specified in the application. - Enclose the required fee with your application unless you have made other arrangements with the Office of Data, Research, and Vital Statistics. A set fee policy governs the provision of copies ofvital records and vital statistics data In any format ki general, fees for copies of individual records are paid at the time the re cords are requested, unless other arrangements are made with the state registrar, if data are requested in any other format an estimate of the cost wM be provi ded and agreement for payment secured before the data are prepared for release, unless other arrangements are made with the state registrar. - To request an application, please contact: Office of Data, Research, and Vital Statistic* State House Station #11 36 Anthony Avenue Augusta, Maine 04333-0011 Telephone: (207) 624-6445 R&S151261 RELEASE OF RESTRICTED VITAL STATISTICS DATA (excerpts) 1. Definitions. For purposes of this Chapter 8, the following terms shall have the meanings set forth below: A. Administrative Purposes. 'Administrative purposes' means uses of vital statistics data by federal, state or local govern* ment agencies for the conduct of their official duties. Including planning, program management, eligibility determination, provision of services, quality control, and program evaluatloa C. Birth Lists. "Birth lists' means lists that shall include only the following data from birth records: child's name, date of birth, sex, city or town of birth, and mother's mailing address. In the case of adoptions and legitimations, birth lists shall contain only the name and address alter adop tion'or legitimation, pursuant to Title 22 M.R.S.A. Sec.2765. Birth lists shall not include parents' names or any other Information from which legitimacy status can be Inferred. F. Direct and Legitimate Interest The following Individuals and entitles shall be deemed to have a "direct and legitimate Interest" In the data contained in a vital record. (1) Registrant or related Individuals; (2) Federal or State agencies, Maine municipal governments and Maine public school districts, any which may require such data for administrative purposes In the conduct of their official duties; and (3) Those individuals conducting health, medical, and social research. Including those in governmental agencies, which have potential for reducing morbidity and mortality within Maine, for furthering scientific understanding of disease processes, or for improving health and aodal - services. . (4) Others may be authorized to obtain confidential data when they demonstrate that such Information Is needed for the determination or protection of personal property rights. Media representatives and commerical firms other than those conducting health, medical or social research shall not be considered to have a direct and legitimate Interest. L Identifying Data, "identifying data" means the names and street addresses of the registrants) and other individuals named on the vital record (e.g., parents, Informant, physi cian, funeral director) and the month and day of the event The year that an event occurred is not Identifying data. L. Nonrestricted Vital Statistics Data or Nonrestrlcted Data. "Nonrestricted vital statistics data* means the following Information: (1) Aggregated statistical data, Including confidential data, which do not (directly or indirectly) identify any Individual. (2) Individual vital records, including confidential data, which do not (directly or Indirectly) identify any individual. (3) Information from the legal sections of individual vital records, excluding confidential data and data from which confidential information can be Inferred. (4) Birth Hsts. N. Registrant "Registrant" means the person or persons to whom the vital record pertains: the child named on a birth certificate, the decedent named on a death certificate, the bride and groom named on a marriage certificate, the hus band and wife named on a divorce record, and the mother and father named on a fetal death certificate. O. Related Individuals. "Related individuals" means a member of the Immediate family of the registrant or descendants thereof, the registrant's legal custodian or guardian, or their respective authorized representatives. "Authorized representative" shall Include an attorney, physician, or funeral director. Other agents authorized in writing to act In , behalf of the registrant or hls or her Immediate family or descendants thereof are also considered to be related Indi viduals for the purposes of this chapter. The biological par ents of adopted children, when neither has custody, shall not be considered to be related Individuals for the purposes of this chapter. P. Restricted Data.' "Restricted data" means confidential data presented In conjunction with identifying data or with other Information which may allow Indirect identification of the registrant or other Individuals named on the vital record. 2. Standards for release of vital statistics data C. Application submitted (1) All requests for release of restricted data must be submit ted to the municipal clerk or to the Office of Vital Statistics on the application form prescribed and furnished by the state registrar for the purpose of determining the request or's eligibility to receive such data. E.Fee (1) All data released in response to requests (in the case of non-restricted data) or approved applications (in the case of restricted data) shall be subject to set charges in accord ance with the general fee policy of the Office of Data. Research, & Vital Statistics. (a) Fees for certified or noneertified copies of vital records are specified by regulation (10-148 CMR 8),, the applicable fees shall be paid in advance of the release of the data requested or applied for. (b) Charges for data released In other formats (e.g., lists, labels, computer tapes, printouts, etc.) shall Include, but not be limited to, computer time, programming time, materials, photocopying, and any other costs Incurred In producing the requested data. An estimate of charges for such requests must be provided to the requestor and agreement for payment secured prior to preparation of the data for release. F. Penalties* (1) Disclosure of restricted data, except as authorized In this chapter. Is subject to criminal penalties as specified in Title 22, M.R.SJL Sec. 2708(2). (2) Any person who willfully provides false information In connection with this rule Is subject to criminal penalties as specified In Title 22, M.R.SA Sec. 2708(2). 4. Release of restricted data for administrative and statistical research purposes. I use(s i following Individual* and entitle* shall be deemed I user*, based upon the intended purposes or uses (ofsuch restricted data: ft) Administrative purposes (*) Maine state government agencies and the Department lb) Federal or municipal government agencies. Including ipublic school districts. JSuUstlcal research purposes (a) Maine state government agencies conducting research [related totheir official duties. 6) Those Individuals, nonprofit organizations, public entitles Pnd businesses conducting health, medical, and social clt ns for release ted data may be released to an applicant only when ft'ytate registrar Is satisfied that the following criteria are ^Restricted or Identifying vital statistics data are essential irthe agency to conduct Its official duties or for the . [conduct of the research. t with Individuals on the basis of Information from I statistics data, If Intended, is required for the admlnts- s purposes specified In the application, or In the case [research study, meets professional standards for ' ' i subjects research. " A twith other data bases. If planned, are essential Neadministrative purposes specified in the application xcooduct of the research and will not lead to urvauth- I disclosure of restricted vital statistics data. I data will not be further disclosed or used for i other than those for which theywere requested ^ authorized by the state registrar. X V" % : procedures are In place to secure vital statls- IfUtafrom unauthorized access or use for purposes Tf than those for which they were requested: locked i notln use and accessed only by authorized Indiv- "|for the purposes stated In the application. i of restricted vital statistics data wfll be made QHanwerthat will not permit unauthorized disclosure. > Agreement has been signed by sn Individual ___ 1 to execute agreements, stating that the agency |9Wnizat!on will meet and conform to the stated under which the restricted vital statistics ( be used, as specified In the application. - d. Disclosure Agreements have been obtained yother organization oragency that will be 1 restricted data. ^conditions for statistical research use of restricted I4ata released for use In research shall not be used, " m Pdrt, for administrative, legal or other nonstatlseswhich may directly,affect particular Individuals *Mthejr specific Identification In the study. v - F. Additional conditions for statistical research use of restrict* ed birth certificate data. (1) Researchers who plan contact with the registrant, family members or other Individual*, based on birth certificate data, must satisfy the state registrar that surveys and related materials (envelope, cover letter, questionnaire, other data) will not disclose legitimacy status (Le, fact of Illegitimacy). - (2) Under no circumstances may Information on father's name . be released by the researcher. The presence or absence of this Rem on an Individual record in effect may disclose ~ legitimacy status. G. Additional conditions for use of data from other states. (1) Use of vital statistics data obtained from other states In ac cordance with the Interstate Exchange Agreement, which do not Include Identifying data, may be authorized under this ' section for research purposes. (2) Research requests for release of Individual names or other personal Identifiers require the written permission of the state where the record Is officially registered. (3) Administrative requests for vital statistics data obtained from other states In accordance with the Interstate Exchange Agreement require the written permission of the state where the record Is officially registered. H. Continuing use. (1) Restricted data may be released on an ongoing basis If' ^ needed for the requesting organization to conduct Its - official duties or for conduct of the research. (2) The state registrar may approve applications for periods of up to three years, so long as there are no significant changes, as specified In paragraph (3) below. In the uses described in the initial application. (3) A new or updated appHcaOon must be submitted to the state registrar, together with a new Disclosure Agreement, . If there are changes In any ofthe following areas: a. Purpose ofwhlch restricted data wftl be used. . b. Contact with the registrant, family members, or other Individuals on the basis of vital statistics data. c. Linkage with other data within the requesting organization. d. How or to whom restricted data will be released. e. Procedures for securing restricted data. f. Procedures and timetable for disposition of restricted data. g. Individual responsible for conformance to standards for release of restricted data. h. Other agencies or organizations receiving restricted (4) After three years, a new or updated application must be submitted to the state registrar, together with a new Disclosure Agreement , (ACCESSEN/sw) R&S151263 NON-DISCRIMINATION NOTICE In accordance with Title VI of the Civil Rights Act of 1964, as > amended by the Civil Rights Restoration Act of 1991 (42 " U.S.C. Section 1981, 2000e et set}.) Section 604 of the 5 Rehabilitation Act of 1973, as amended (29 U.S.C. Section 794, the Age Discrimination Act of 1975, as amended (42 ;; U.S.C. Section 6101 et seq.). Title II of the Americans with'' DisabilitiesAct of 1990 (42 US.C. Section 12101 etseq.),and " Title IX of the Education Amendments of 1972, the Maine Department of Human Services does not discriminate on the basis of sex, race, color, national origin, disability or age In admission or access to or treatment or employment in Its programs and activities. Ann Twombly, Affirmative Action Coordinator, has been designated to coordinate our efforts to comply with the US. Department of Health and Human Services regulation (45 C.F.R. Parts 80, 84, and 91) and the U.S. Department of Education regulations (34 C.F.R. Part 106) Implementing these Federal laws. Inquiries concerning the application of these regulations and our grievance procedures for resolution of complaints alleging discrimination may be referred to Ann Twombly at 221 State Street, Augusta, Maine 04333, Telephone number: (207) 287-3488 (Voice) or 1-800-332-1003 (TTD), or the Assistant Secretary of the un Btnhf*. Washington. D.C. Prepared by State of Maine Department of Human Services Officeof IMta, Research, and Vital Statistics Published In June, 1993 As Required by22 MRSA Section 2701 Authorized by 22 M.R.SA Sec. 2706 Appropriation Number 010-10A-1116-012