(a) The information collected under this part shall be used by the department of health or researchers only for the purpose of advancing medical and public health research, medical education, or education of the public and health care providers in the interest of reducing morbidity or mortality or increasing physicians’ knowledge of resources available for families of persons with birth defects, and only as approved or exempted by an institutional review board.
Terms Used In Hawaii Revised Statutes 324-43
Institutional review board: means an institutional review board established in accordance with 7 Code of Federal Regulations 1c. See Hawaii Revised Statutes 324-41
Research: means a systematic investigation designed to develop or contribute to generalizable knowledge. See Hawaii Revised Statutes 324-41
Researcher: means a person who is conducting research which has been approved or declared exempt by an institutional review board. See Hawaii Revised Statutes 324-41
(b) The identity of, or any information which alone or in combination with other reasonably available information that may be used to identify, any person whose condition or treatment has been studied under this part shall be confidential.(c) If the birth defects program or researchers intend to collect additional information directly from a patient or patient’s relative for research studies approved by an institutional review board, the researcher shall first obtain approval for the request from the patient’s primary care provider. If the patient’s current physician is not known, the patient may be contacted directly using a method approved by an institutional review board. The use of the additional information obtained by researchers shall be governed by subsection (a).
