Confidentiality of Newborn Screening Test Results and Information

(A) The Newborn Blood Screening Program shall maintain the confidentiality of testing results generated by the Program and information submitted to the Program for purposes of newborn screening and follow-up of newborn testing. (B) Other than as required for routine notification of newborn blood testing results or for follow up diagnosis or treatment of an individual as described in 105 CMR 270.009, the Newborn Blood Screening Program shall not disclose newborn screening results or any information or patient identifiers which because of name, identifying number, mark or description can be readily associated with a particular individual or the individual's parents/guardians, or any newborn screening information that could be used in combination with other information to identify an individual, except to: (1) that individual; (2) the individual's parents or guardians if a minor; (3) the personal representative of the individual's estate; (4) anyone authorized in writing by that individual or the individual's legal representative; (5) authorized Department and Newborn Blood Screening Program personnel; (6) authorized staff at other state newborn screening programs responsible for the follow up of the particular newborn; (7) anyone authorized to receive such information pursuant to a court order; (8) anyone authorized to receive such information by law, including, but not limited to, a state or local child fatality review team pursuant to M.G.L. c. 38, § 2A, at the request of the local district attorney, or the Office of the Chief Medical Examiner pursuant to M.G.L. c. 38, § 4, at the request of the Chief Medical Examiner, or his or her designee, in order to establish the cause and manner of death and identity of the deceased; or (9) any researcher approved by the Department to conduct a specific study pursuant to M.G.L. c. 111, § 24A, and when approved by an Institutional Review Board. Newborn screening information or data that could be used to identify an individual shall not be disclosed to a researcher without the written consent of a parent or guardian unless a waiver of consent has been issued from an Institutional Review Board. (C) All individually identifiable newborn screening information or data shall be considered confidential and shall not be available as a public record under M.G.L. c. 66.