65-1,172. Same; uses of confidential data. (a) Confidential data collected pursuant to this act shall be securely locked and used only for the following purposes:
(1) Ensuring the quality and completeness of the registry data.
(2) Investigating the nature and cause of abnormal clusterings of cancer and the possible cancer risk related to having an abortion.
(3) Offering through the personal physician, to persons with cancer, access to cancer diagnostics and treatments not available except through clinical trials. As long as such trials are conducted with the informed, written consent of the cancer patient, the confidential data is approved for release by the secretary for the purpose of such clinical trials and the clinical trials are approved by the clinical entity.
(4) Releasing data back to the institution or individual which reported cases as long as such release includes only those cases previously reported by the requesting institution or individual.
(5) As part of an exchange agreement with another state, confidential data collected on a resident of another state may be released to the cancer registry of that person's state of residence if that state has confidentiality requirements that provide assurance of protection of confidentiality equivalent to that provided by Kansas under this act.
(6) Releasing information upon consent, in writing, of the person who is the subject of the information, or if such person is under 18 years of age, by such person's parent or guardian.
(7) Follow up for public health purposes. With the approval of the health and environmental institutional review board as provided for in title 45, part 46 of the code of federal regulations, the secretary of health and environment or the secretary's designee, may contact individuals who are the subjects of the reports made pursuant to K.S.A. 65-1,169, and amendments thereto. The secretary shall inform such individuals that the participation in such projects is voluntary and may only be conducted with the written consent of the person who is the subject of the information or with the informed consent of a parent or legal guardian if the person is under 18 years of age. Informed consent is not required if the person who is the subject of the information is deceased.
(b) The secretary shall adopt rules and regulations to define who may be authorized to conduct such follow up studies and to develop criteria for obtaining informed consent.
History: L. 1997, ch. 110, § 5; L. 2007, ch. 177, § 24; May 17.
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