Z-557                 _______________________________________________

 

                                                   SENATE BILL NO. 3437

                        _______________________________________________

 

State of Washington                              49th Legislature                              1985 Regular Session

 

By Senators Granlund and Kiskaddon; by Department of Social and Health Services request

 

 

Read first time 1/30/85 and referred to Committee on Human Services and Corrections.

 

 


AN ACT Relating to disclosure of personal records for research purposes; adding a new section to chapter 42.17 RCW; and prescribing penalties.

 

BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF WASHINGTON:

 

          NEW SECTION.  Sec. 1.  A new section is added to chapter 42.17 RCW to read as follows:

          (1) A state agency may authorize or provide access to or provide copies of an individually identifiable personal record for research purposes if informed written consent for the disclosure has been given to the head of the agency or his or her designee by the person in interest as defined in RCW 42.17.020.

          (2) A state agency may authorize or provide access to or provide copies of an individually identifiable personal record for research purposes without the informed consent of the person in interest, only if:

          (a) The state agency adopts research review and approval rules including, but not limited to, the requirement that the head of the state agency appoint a review body competent to review research proposals as to ethical and scientific soundness; and the review body determines that the disclosure request has scientific merit, that the research purposes cannot be reasonably accomplished without disclosure of the information in individually identifiable form and without waiver of the informed consent of the person in interest, that disclosure risks have been minimized, and that remaining risks are outweighed by anticipated health, safety, or scientific benefits; and

          (b) The disclosure does not violate federal law; and

          (c) The state agency negotiates with the research professional receiving the records or record information a written and legally binding confidentiality agreement prior to disclosure.  The agreement shall:

          (i) Establish specific safeguards to assure the continued confidentiality and security of individually identifiable records or record information;

          (ii) Ensure that the research professional will report or publish research findings and conclusions in a manner that does not permit identification of the person whose record was used for the research. Final research reports or publications shall not include photographs or other visual representations contained in personal records;

          (iii) Establish that the research professional will destroy the individual identifiers associated with the records or record information as soon as the purposes of the research project have been accomplished and notify the disclosing state agency to this effect in writing;

          (iv) Prohibit any subsequent disclosure of the records or record information in individually identifiable form except as provided in subsection (4) of this section; and

          (v) Provide for the signature of the research professional and of the state agency official authorized to approve disclosure of identifiable records or record information for research purposes.

          (3) In addition to the copying charges provided in RCW 42.17.300, state agencies may impose a reasonable charge for costs incurred in  providing assistance in the following research activities involving personal records:

          (a) Manual or computer screening of personal records for scientific sampling purposes according to specifications provided by the research professional;

          (b) Manual or computer extraction of information from a universe or sample of personal records according to specifications provided by the research professional;

          (c) Statistical manipulation or analysis of personal record information, whether manually or by computer, according to specifications provided by the research professional.

          The charges imposed by a state agency may not exceed the amount necessary to reimburse the agency for its actual costs in providing requested research assistance.

          (4) No research professional who has established an individually identifiable research record from personal record information pursuant to subsection (2) of this section, or who has established a research record from data or information voluntarily provided by a state agency client or employee under a written confidentiality assurance for the explicit purpose of research, may disclose such a record in individually identifiable form unless:

(a) The person in interest has given prior informed written consent for the disclosure; or

          (b) The research professional reasonably believes that disclosure will prevent or minimize injury to a person and the disclosure is limited to information necessary to protect the person who has been or may be injured, and the research professional reports the disclosure to the cooperating state agency; or

          (c) (i) The research record is disclosed in individually identifiable form for the purposes of auditing or evaluating a research program; and

          (ii) The audit or evaluation is authorized or required by federal or state law or regulation or is based upon an explicit provision in a research contract, grant, or other written research agreement; and

          (iii) No subsequent disclosure of the research record in individually identifiable form will be made by the auditor or evaluator except as provided in this section; or

          (d) The research record is furnished in compliance with a search warrant or court order:  PROVIDED, That:

          (i) The court issues the search warrant or judicial subpoena concerning the research record solely for the purpose of facilitating inquiry into an alleged violation of law by the research professional using the record for a research purpose or by a person or state agency maintaining the research records; and

          (ii) Any research record obtained pursuant to (d)(i) of this subsection and any information directly or indirectly derived from the research record shall remain confidential to the extent possible and shall not be used as evidence in an administrative, judicial, or legislative proceeding except against the research professional using the record for a research purpose or a person or state agency maintaining research records.

          (5) Unauthorized disclosure, whether wilful or negligent, by a research professional who has obtained an individually identifiable personal record or record information from a state agency pursuant to subsection (2) of this section is a gross misdemeanor.  In addition, the research professional or a state agency who violates any provisions of this section may be subject to a civil penalty of not more than ten thousand dollars for each such violation.

          (6) Nothing in subsections (1) through (4) of this section is applicable to, or in any way affects, the powers and duties of the state auditor or the legislative budget committee.

          (7) This section does not apply to the department of employment security.

          (8) For the purposes of this section, the following additional definitions apply:

          (a) "Personal record" means any writing as defined in RCW 42.17.020 containing information obtained or maintained by a state agency which refers to a person and which is declared exempt from public disclosure, confidential, privileged, or eligible to be exempt from disclosure under state or federal law.

          (b) "Research record" means an item or collection of information obtained for the purpose of research from or about a person or extracted for the purpose of research from a personal record.

          (c) "Individually identifiable" means that a record contains information which reveals or can likely be associated with the identity of the person or persons to whom the record pertains.

          (d) "Research" means a planned and systematic sociological, psychological, epidemiological, biomedical, or other scientific investigation carried out by a state agency, by a scientific research professional associated with a bona fide scientific research organization, or by a graduate student currently enrolled in an advanced academic degree curriculum, with an objective to contribute to scientific knowledge, the solution of social and health problems, or the evaluation of public benefit and service programs.  This definition excludes methods of record analysis and data collection that are subjective, do not permit replication, and are not designed to yield reliable and valid results.

 

          NEW SECTION.  Sec. 2.     If any provision of this act or its application to any person or circumstance is held invalid, the remainder of the act or the application of the provision to other persons or circumstances is not affected.