W. Va. Code R. § 64-68-5 - Confidentiality; Disclosure

5.1. No person who obtains information protected by the provisions of WV Code § 16-5A-2a and this rule may disclose confidential information to any other person except in strict compliance with WV Code § 16-5A-2a and this rule.

5.2. Any person who obtains information protected by the provisions of WV Code § 16-5A-2a and this rule shall sign a statement that he or she fully understands and will maintain the confidentiality of the information.

5.3. The West Virginia Cancer Registry may release information which identifies a specific patient to the reporting source which originally reported the cancer case.

5.4. The West Virginia Cancer Registry may release information which identifies a specific patient whose address at the time of diagnosis was outside West Virginia to the central cancer registry in the state where the patient resides. The West Virginia Cancer Registry shall release the information only to central cancer registries in states which have confidentiality standards equivalent to those of West Virginia and which establish reciprocal reporting with West Virginia. The West Virginia Cancer Registry shall have a written agreement with other state cancer registries to which it releases information which specifically addresses provisions for maintaining confidentiality.

5.5. The West Virginia Cancer Registry may release case data to cancer researchers for the purposes of cancer prevention, control and research.

5.5.a. Identifying data may be released for research purposes provided:

5.5.a.1. The researcher supplies the West Virginia Cancer Registry with written consent of the patient, physician, health care provider or personal representative of a deceased case, whichever is appropriate; and

5.5.a.2. The researcher assures that the data received from the West Virginia Cancer Registry will be maintained by the researcher with the same level of confidentiality as that maintained by the West Virginia Cancer Registry.

5.5.b. In accordance with the provisions of the Legislative rule on Reportable Diseases, Events and Conditions, 64CSR7, the West Virginia Cancer Registry may contact individual patients who have cancer and are in the West Virginia Cancer Registry for the purpose of patient recruitment for a research study.

5.5.c. The West Virginia Cancer Registry may provide data linkages to appropriate researchers or institutions to allow for the meaningful use of cancer registry data for a fee. The fee shall be eight hundred dollars ($800.00) per linkage and a fifty dollar ($50.00) per hour assessment for the bureau employee staff time associated with completing the data linkage. The fee shall be assessed and collected by the Office of Epidemiology and Prevention Services of the bureau and shall be deposited into the health services fund.

Notes

W. Va. Code R. § 64-68-5