410 ILCS 525/ Illinois Health and Hazardous Substances Registry Act.

(410 ILCS 525/1) (from Ch. 111 1/2, par. 6701)

Sec. 1. This Article shall be known and may be cited as the "Illinois Health and Hazardous Substances Registry Act".

(Source: P.A. 83-1361.)

(410 ILCS 525/2) (from Ch. 111 1/2, par. 6702)

Sec. 2. (a) The General Assembly finds that:

(i) the dangers of hazardous substances pose a serious threat to the public health and welfare of the citizens of Illinois;

(ii) there exists no unified effort to collect and analyze information on hazardous substances and their potential health effects;

(iii) the lack of comprehensive information has caused concern on the part of Illinois citizens and a lack of effective control by the State government;

(iv) it is the obligation of the State government to inform and protect the citizens of Illinois by developing a comprehensive and integrated data system on hazardous substances and public health.

(b) It is the purpose of this Act to establish a unified Statewide project to collect, compile and correlate information on public health and hazardous substances. Such information is to be used to assist in the determination of public policy and to provide a source of information for the public, except when public disclosure of the information would violate the provisions of subsection (d) of Section 4 concerning confidentiality.

(c) In particular, the purpose of the collection of cancer incidence information is to:

(1) monitor incidence trends of cancer to detect potential public health problems, predict risks and assist in investigating cancer clusters;

(2) more accurately target intervention resources for communities and patients and their families;

(3) inform health professionals and citizens about risks, early detection and treatment of cancers known to be elevated in their communities; and

(4) promote high quality research to provide better information for cancer control and to address public concerns and questions about cancer.

(Source: P.A. 90-607, eff. 6-30-98.)

(410 ILCS 525/3) (from Ch. 111 1/2, par. 6703)

(Text of Section before amendment by P.A. 103-962)

Sec. 3. For the purposes of this Act, unless the context requires otherwise:

(a) "Department" means the Illinois Department of Public Health.

(b) "Director" means the Director of the Illinois Department of Public Health.

(c) "Council" means the Health and Hazardous Substances Coordinating Council created by this Act.

(d) "Registry" means the Illinois Health and Hazardous Substances Registry established by the Department of Public Health under Section 6 of this Act.

(e) "Cancer" means all malignant neoplasms, regardless of the tissue of origin, including malignant lymphoma and leukemia.

(f) "Cancer incidence" means a medical diagnosis of cancer, consisting of a record of cases of cancer and specified cases of tumorous or precancerous diseases which occur in Illinois, and such other information concerning these cases as the Department deems necessary or appropriate in order to conduct thorough and complete epidemiological surveys of cancer and cancer-related diseases in Illinois.

(g) "Occupational disease" includes but is not limited to all occupational diseases covered by the Workers' Occupational Diseases Act.

(h) "Hazardous substances" means a hazardous substance as defined in the Environmental Protection Act.

(i) "Hazardous substances incident" includes but is not limited to a spill, fire, or accident involving hazardous substances, illegal disposal, transportation, or use of hazardous substances, and complaints or permit violations involving hazardous substances.

(j) "Company profile" includes but is not limited to the name of any company operating in the State of Illinois which generates, uses, disposes of or transports hazardous substances, identification of the types of permits issued in such company's name relating to transactions involving hazardous substances, inventory of hazardous substances handled by such company, and the manner in which such hazardous substances are used, disposed of, or transported by the company.

(k) "Hazardous nuclear material" means (1) any source or special nuclear material intended for use or used as an energy source in a production or utilization facility as defined in Sec. 11.v. or 11.cc. of the federal Atomic Energy Act of 1954 as amended; (2) any fuel which has been discharged from such a facility following irradiation, the constituent elements of which have not been separated by reprocessing; or (3) any by-product material resulting from operation of such a facility.

(l) "Adverse pregnancy outcome" includes but is not limited to birth defects, fetal loss, infant mortality, low birth weight, selected life-threatening conditions, and other developmental disabilities as defined by the Department.

(m) "News medium" means any newspaper or other periodical issued at regular intervals, whether in print or electronic format, and having a general circulation; a news service, whether in print or electronic format; a radio station, a television station; a television network; a community antenna television service; and any person or corporation engaged in the making of news reels or other motion picture news for public showing.

(n) "Researcher" means an individual who is affiliated with or supported by universities, academic centers, research institutions, hospitals, and governmental entities who conduct scientific research or investigation on human diseases.

(Source: P.A. 95-941, eff. 8-29-08.)

(Text of Section after amendment by P.A. 103-962)

Sec. 3. For the purposes of this Act, unless the context requires otherwise:

(a) "Department" means the Illinois Department of Public Health.

(b) "Director" means the Director of the Illinois Department of Public Health.

(c) (Blank).

(d) "Registry" means the Illinois Health and Hazardous Substances Registry established by the Department of Public Health under Section 6 of this Act.

(e) "Cancer" means all malignant neoplasms, regardless of the tissue of origin, including malignant lymphoma and leukemia.

(f) "Cancer incidence" means a medical diagnosis of cancer, consisting of a record of cases of cancer and specified cases of tumorous or precancerous diseases which occur in Illinois, and such other information concerning these cases as the Department deems necessary or appropriate in order to conduct thorough and complete epidemiological surveys of cancer and cancer-related diseases in Illinois.

(g) "Occupational disease" includes but is not limited to all occupational diseases covered by the Workers' Occupational Diseases Act.

(h) "Hazardous substances" means a hazardous substance as defined in the Environmental Protection Act.

(i) "Hazardous substances incident" includes but is not limited to a spill, fire, or accident involving hazardous substances, illegal disposal, transportation, or use of hazardous substances, and complaints or permit violations involving hazardous substances.

(j) "Company profile" includes but is not limited to the name of any company operating in the State of Illinois which generates, uses, disposes of or transports hazardous substances, identification of the types of permits issued in such company's name relating to transactions involving hazardous substances, inventory of hazardous substances handled by such company, and the manner in which such hazardous substances are used, disposed of, or transported by the company.

(k) "Hazardous nuclear material" means (1) any source or special nuclear material intended for use or used as an energy source in a production or utilization facility as defined in Sec. 11.v. or 11.cc. of the federal Atomic Energy Act of 1954 as amended; (2) any fuel which has been discharged from such a facility following irradiation, the constituent elements of which have not been separated by reprocessing; or (3) any by-product material resulting from operation of such a facility.

(l) "Adverse pregnancy outcome" includes but is not limited to birth defects, fetal loss, infant mortality, low birth weight, selected life-threatening conditions, and other developmental disabilities as defined by the Department.

(m) "News medium" means any newspaper or other periodical issued at regular intervals, whether in print or electronic format, and having a general circulation; a news service, whether in print or electronic format; a radio station, a television station; a television network; a community antenna television service; and any person or corporation engaged in the making of news reels or other motion picture news for public showing.

(n) "Researcher" means an individual who is affiliated with or supported by universities, academic centers, research institutions, hospitals, and governmental entities who conduct scientific research or investigation on human diseases.

(Source: P.A. 103-962, eff. 1-1-25.)

(410 ILCS 525/4) (from Ch. 111 1/2, par. 6704)

(Text of Section before amendment by P.A. 103-962)

Sec. 4. (a) There is created the Health and Hazardous Substances Coordinating Council, to be comprised of the following persons ex officio or their designees: Dean of the School of Public Health of the University of Illinois, Director of Natural Resources, Director of Public Health, Director of Labor, Director of Agriculture, Director of the Environmental Protection Agency and the Director of Nuclear Safety.

The University of Illinois School of Public Health shall advise the Department in the design, function and utilization of the Registry.

(b) To facilitate the collection of cancer incidence information, the Department, in consultation with the Advisory Board of Cancer Control, shall have the authority to require hospitals, laboratories or other facilities to report incidences of cancer and other specified tumorous and precancerous diseases to the Department, and to require the submission of such other information pertaining to or in connection with such reported cases as the Department deems necessary or appropriate for the purposes of this Act. The Department may promulgate rules or regulations specifying the hospitals, laboratories or other facilities which are required to submit information pursuant to this Section, the types of information required to be submitted, methods of submitting such information and any other detail deemed by the Department to be necessary or appropriate for administration of this Act. Nothing in this Act shall be construed to compel any individual to submit to a medical examination or supervision.

(c) The Director shall by rule or regulation establish standards or guidelines for ensuring the protection of information made confidential or privileged under law.

(d) The identity, or any group of facts that tends to lead to the identity, of any person whose condition or treatment is submitted to the Illinois Health and Hazardous Substances Registry is confidential and shall not be open to public inspection or dissemination and is exempt from disclosure under Section 7 of the Freedom of Information Act. The following data elements, alone or in combination, are confidential, shall not be open to public inspection or dissemination, and are exempt from disclosure under Section 7 of the Freedom of Information Act: name, social security number, street address, email address, telephone number, fax number, medical record number, certificate/license number, reporting source (unless permitted by the reporting facility), age (unless aggregated for 5 or more years, ZIP code (unless aggregated for 5 or more years), and diagnosis date (unless aggregated for one or more years for the entire State or for 3 or more years for a single county). The identity of any person or persons claimed to be derived from cancer registry data is not admissible in evidence, and no court shall require information to be produced in discovery if it determines that the information tends to lead to the identity of any person. Information for specific research purposes may be released in accordance with procedures established by the Department. Except as provided by rule, and as part of an epidemiologic investigation, an officer or employee of the Department may interview a patient named in a report made under this Act, or relatives of any such patient, only with the express written consent of the patient.

(e) Hospitals, laboratories, other facilities or physicians shall not be held liable for the release of information or confidential data to the Department in accordance with this Act. The Department shall protect any information made confidential or privileged under law.

(Source: P.A. 95-941, eff. 8-29-08.)

(Text of Section after amendment by P.A. 103-962)

Sec. 4. (a) The University of Illinois School of Public Health shall advise the Department in the design, function and utilization of the Registry.

(b) To facilitate the collection of cancer incidence information, the Department, in consultation with the Advisory Board of Cancer Control, shall have the authority to require hospitals, laboratories or other facilities to report incidences of cancer and other specified tumorous and precancerous diseases to the Department, and to require the submission of such other information pertaining to or in connection with such reported cases as the Department deems necessary or appropriate for the purposes of this Act. The Department may promulgate rules or regulations specifying the hospitals, laboratories or other facilities which are required to submit information pursuant to this Section, the types of information required to be submitted, methods of submitting such information and any other detail deemed by the Department to be necessary or appropriate for administration of this Act. Nothing in this Act shall be construed to compel any individual to submit to a medical examination or supervision.

(c) The Director shall by rule or regulation establish standards or guidelines for ensuring the protection of information made confidential or privileged under law.

(d) The identity, or any group of facts that tends to lead to the identity, of any person whose condition or treatment is submitted to the Illinois Health and Hazardous Substances Registry is confidential and shall not be open to public inspection or dissemination and is exempt from disclosure under Section 7 of the Freedom of Information Act. The following data elements, alone or in combination, are confidential, shall not be open to public inspection or dissemination, and are exempt from disclosure under Section 7 of the Freedom of Information Act: name, social security number, street address, email address, telephone number, fax number, medical record number, certificate/license number, reporting source (unless permitted by the reporting facility), age (unless aggregated for 5 or more years, ZIP code (unless aggregated for 5 or more years), and diagnosis date (unless aggregated for one or more years for the entire State or for 3 or more years for a single county). The identity of any person or persons claimed to be derived from cancer registry data is not admissible in evidence, and no court shall require information to be produced in discovery if it determines that the information tends to lead to the identity of any person. Information for specific research purposes may be released in accordance with procedures established by the Department. Except as provided by rule, and as part of an epidemiologic investigation, an officer or employee of the Department may interview a patient named in a report made under this Act, or relatives of any such patient, only with the express written consent of the patient.

(e) Hospitals, laboratories, other facilities or physicians shall not be held liable for the release of information or confidential data to the Department in accordance with this Act. The Department shall protect any information made confidential or privileged under law.

(Source: P.A. 103-962, eff. 1-1-25.)

(410 ILCS 525/5) (from Ch. 111 1/2, par. 6705)

(Section scheduled to be repealed on January 1, 2025)

Sec. 5. The Council shall have the following duties:

(i) to oversee and ensure the effective administration of this Act by the Department;

(ii) to coordinate and facilitate the collection of information by the Department under this Act;

(iii) to initiate and coordinate efforts to obtain private or public grants to fund the Registry;

(iv) to approve the annual report issued by the Department pursuant to subsection (d) of Section 6 of this Act; and

(v) to establish guidelines, as it deems necessary or desirable, for the effective administration of this Act.

(Source: P.A. 83-1361. Repealed by P.A. 103-962, eff. 1-1-25.)

(410 ILCS 525/6) (from Ch. 111 1/2, par. 6706)

(Text of Section before amendment by P.A. 103-962)

Sec. 6. (a) No later than January 1, 1985, the Department shall commence the work necessary to compile the information which will constitute the Health and Hazardous Substances Registry. The Registry shall consist of the compilation of information in the following categories:

(i) adverse pregnancy outcomes;

(ii) cancer incidences;

(iii) occupational diseases;

(iv) location, transportation, and exposure to hazardous nuclear materials;

(v) company profiles; and

(vi) hazardous substances incidents.

The Department, pursuant to any guidelines established by the Council, shall promulgate rules or regulations specifying the types of information in each category which will be compiled for the Registry. Such information shall be compiled in the Registry in such a manner as to allow for geographical correlation of the data on public health and the data on hazardous substances and hazardous nuclear materials. To the extent feasible, the Registry shall be compatible with other national models of such type so as to facilitate the coordination of information with other data bases.

(Source: P.A. 83-1361.)

(Text of Section after amendment by P.A. 103-962)

Sec. 6. (a) No later than January 1, 1985, the Department shall commence the work necessary to compile the information which will constitute the Health and Hazardous Substances Registry. The Registry shall consist of the compilation of information in the following categories:

(i) adverse pregnancy outcomes;

(ii) cancer incidences;

(iii) occupational diseases;

(iv) location, transportation, and exposure to hazardous nuclear materials;

(v) company profiles; and

(vi) hazardous substances incidents.

The Department shall promulgate rules or regulations specifying the types of information in each category which will be compiled for the Registry. Such information shall be compiled in the Registry in such a manner as to allow for geographical correlation of the data on public health and the data on hazardous substances and hazardous nuclear materials. To the extent feasible, the Registry shall be compatible with other national models of such type so as to facilitate the coordination of information with other data bases.

(Source: P.A. 103-962, eff. 1-1-25.)

(410 ILCS 525/7) (from Ch. 111 1/2, par. 6707)

Sec. 7. Subject to appropriation, monies in the Hazardous Waste Research Fund in the State Treasury shall be available to the Department for the administration of the Registry. In addition, the Department shall have the authority to accept, receive and administer on behalf of the Registry any grants, gifts, loans or other funds made available to the Registry from any source for purposes of this Act.

(Source: P.A. 83-1361.)

(410 ILCS 525/8) (from Ch. 111 1/2, par. 6708)

Sec. 8. The Department shall annually report to the General Assembly beginning August 31, 1986 and every year thereafter. The annual report shall include information on the progress of the Registry, as well as descriptions of any studies which are underway or have been completed, including those performed to determine the potential public health significance of an increase in cancer incidence, together with any findings and recommendations. The annual report shall also include a list of those persons, organizations and agencies which have refused to cooperate with the Department in the collection or transmittal of information under this Act.

(Source: P.A. 85-1218.)

(410 ILCS 525/9) (from Ch. 111 1/2, par. 6709)

(Text of Section before amendment by P.A. 103-962)

Sec. 9. The Department shall utilize the Registry to conduct research on the relationships between hazardous substances, hazardous nuclear materials, and public health issues. In consultation with the Council, the Director shall establish guidelines for determining the specific questions and areas to be researched. The guidelines shall specifically include the question of the potential public health significance of an increase in cancer incidence. Upon the approval of the Council, the information contained in the Registry shall be available to other State agencies wishing to conduct research on these issues. Upon review and approval of an appropriate Institutional Review Board (IRB) or its equivalent on protection of human subjects in research, the Department shall release data to researchers for purposes of medical and scientific research consistent with the fundamental purposes of the Registry.

(Source: P.A. 95-941, eff. 8-29-08.)

(Text of Section after amendment by P.A. 103-962)

Sec. 9. The Department shall utilize the Registry to conduct research on the relationships between hazardous substances, hazardous nuclear materials, and public health issues. The Director shall establish guidelines for determining the specific questions and areas to be researched. The guidelines shall specifically include the question of the potential public health significance of an increase in cancer incidence. The information contained in the Registry shall be available to other State agencies wishing to conduct research on these issues. Upon review and approval of an appropriate Institutional Review Board (IRB) or its equivalent on protection of human subjects in research, the Department shall release data to researchers for purposes of medical and scientific research consistent with the fundamental purposes of the Registry.

(Source: P.A. 103-962, eff. 1-1-25.)

(410 ILCS 525/9.1)

Sec. 9.1. Release of data to news media. Upon review and approval of an appropriate Institutional Review Board (IRB) or its equivalent on protection of human subjects in research, the Department shall release data not otherwise available for release under the Freedom of Information Act to news media for purposes of public interest research consistent with the fundamental purposes of the Registry.

(Source: P.A. 95-941, eff. 8-29-08.)

(410 ILCS 525/10) (from Ch. 111 1/2, par. 6710)

Sec. 10. The Department may enter into contracts with individuals, corporations, hospitals, universities, not-for-profit corporations, governmental entities or other organizations whereby such individuals, organizations or agencies agree to provide assistance in the compilation of the Registry or to conduct research on behalf of the Department consistent with the purposes of this Act. The Director shall adopt rules governing such contracts, which shall include (1) requirements for a written protocol outlining the purpose and public benefit of the research, (2) the description, methods and projected results of the research, (3) peer review by other scientists, (4) the methods and facilities to protect the confidentiality of the data, and (5) the qualifications of the researcher proposing to undertake the research.

(Source: P.A. 85-1218.)

(410 ILCS 525/11) (from Ch. 111 1/2, par. 6711)

Sec. 11. The University of Illinois School of Public Health shall conduct educational programs for the Department to further the dissemination of knowledge about the relationship between toxic substances and human health which will be useful in the formulation of public policy and will be a source of information for the public.

(Source: P.A. 83-1361.)

(410 ILCS 525/12) (from Ch. 111 1/2, par. 6712)

Sec. 12. All information contained in the Registry, as well as all reports issued by the Department, including the annual report, shall be made available to the public upon request; provided, however, nothing in this Act permits public disclosure of any information made confidential or privileged pursuant to this Act or any other statute. Identification or contact of individuals from public reports or data released under the Freedom of Information Act is prohibited. The Director may, by rule, establish fees to be charged to persons or organizations other than State agencies for requested summaries or analyses of data which are not otherwise included in an annual report. The fees shall not be more than the cost to the Department of supplying the requested information. The Department shall make available on its web site non-confidential public use databases for easy and direct access and download by the public.

(Source: P.A. 95-941, eff. 8-29-08.)

(410 ILCS 525/13) (from Ch. 111 1/2, par. 6713)

(Text of Section before amendment by P.A. 103-962)

Sec. 13. (a) Violation of this Act is a Class A misdemeanor.

(b) Any person who violates this Act shall be liable for a civil penalty not to exceed $1,000 for each violation.

(c) The Council may request the Attorney General or the State's Attorney of the county in which the violation occurred to proceed in a court of competent jurisdiction to secure such relief as provided in this Section, as well as injunctive relief to restrain violations of this Act.

(Source: P.A. 83-1361.)

(Text of Section after amendment by P.A. 103-962)

Sec. 13. (a) Violation of this Act is a Class A misdemeanor.

(b) Any person who violates this Act shall be liable for a civil penalty not to exceed $1,000 for each violation.

(c) The Department may request the Attorney General or the State's Attorney of the county in which the violation occurred to proceed in a court of competent jurisdiction to secure such relief as provided in this Section, as well as injunctive relief to restrain violations of this Act.

(Source: P.A. 103-962, eff. 1-1-25.)

(410 ILCS 525/14) (from Ch. 111 1/2, par. 6714)

Sec. 14. The Department may promulgate rules and regulations for the implementation of this Act.

(Source: P.A. 83-1361.)