Note: Where available, the PDF/Word icon below is provided to view the complete and fully formatted document
Genetic Privacy and Non-discrimination Bill 1998 [2008]

Part 2 Disclosure of genetic information to third persons

8   Disclosure of genetic information

             (1)  A person may disclose genetic information in a genetic record characterised from the DNA sample of an individual only if:

                     (a)  the individual has authorised the disclosure; or

                     (b)  the disclosure is required or authorised by or under law; or

                     (c)  the person believes on reasonable grounds that the disclosure is necessary to prevent or lessen a serious and imminent threat to the life or health of the individual or of another person.

             (2)  The person to whom genetic information has been disclosed may redisclose the information only to the extent reasonable in the exercise of judgment for professional medical consultation for the direct benefit of a patient or with the written authorisation of the individual.

9   Authorisation for disclosure

             (1)  To be valid, the authorisation by an individual must comply with each of the following:

                     (a)  the authorisation must be in writing, signed by the individual, and dated on the day of signature; and

                     (b)  the authorisation must identify the person authorised to make the disclosure; and

                     (c)  the authorisation must describe the specific genetic information to be disclosed; and

                     (d)  the authorisation must identify the person to whom the genetic information is to be disclosed; and

                     (e)  the authorisation must describe the purpose for which the disclosure is being made; and

                      (f)  the authorisation must state the date upon which the authorisation will expire; and

                     (g)  the authorisation must include a statement that the authorisation for disclosure of genetic information may be revoked or amended at any time prior to the disclosure.

             (2)  A copy of the authorisation is to be provided to the individual and a copy of the authorisation retained with the genetic record.

             (3)  An individual may revoke or amend the authorisation at any time before the disclosure. The revocation or amendment must be in writing and addressed to the person who stores the genetic information.

             (4)  Each disclosure made pursuant to the authorisation must be accompanied by the statements set out in Schedule 1.

             (5)  A general authorisation for the release of records or medical information is not to be construed as an authorisation for disclosure of genetic information. With respect to records that contain genetic information, the requirements for disclosure of genetic information that are described in this section are to be fulfilled prior to disclosure of the information.

10   Inspection and copying of genetic records

             (1)  A person who retains the genetic information of an individual in genetic records must, on written request, permit the individual to inspect the genetic records containing the genetic information and may provide a copy of any such records to the individual.

             (2)  A person described in subsection (1) who receives a written request from an individual to inspect or copy genetic records must, not later than 30 days after receiving the request, make the information available to the individual. The person may make the information available by permitting the individual to inspect the genetic records during business hours, or by delivering a copy of the genetic records to the individual.

             (3)  A person must provide a non-technical explanation of terms, and any codes or abbreviations, used in the genetic records of the individual requesting the genetic records.

             (4)  The person may charge an individual (except an individual who participates as a subject in a research project) a reasonable fee, for copies of genetic records that are provided under section 16. The fee must not exceed the actual duplication costs, including administrative costs, to the person providing the copies.

11   Amendment of genetic records

             (1)  Not later than 30 days after receiving a written request by an individual to amend any genetic records, a person who retains the genetic information in the records must either agree or refuse to add the written amendment to the record. The person must make the amendment if such information is not accurate or complete for the purposes for which such information may be used or disclosed by the person.

             (2)  If the person retaining the information agrees to make an amendment under subsection (1), the person must, not later than 30 days after such receipt:

                     (a)  make the amendment requested; and

                     (b)  inform the individual that the amendment has been made; and

                     (c)  make reasonable efforts to inform any other person to whom the information was previously disclosed of the amendment.

             (3)  If the person retaining the information refuses to make an amendment under subsection (1), not later than 30 days after such receipt, the person must inform the individual in writing of:

                     (a)  the reasons for the refusal of the person to make the amendment; and

                     (b)  the procedures for further review of the refusal; and

                     (c)  the right of the individual to provide the person with a concise written statement setting out the requested amendment and the reasons of the individual for disagreeing with the refusal of the person to make the amendment.

             (4)  After an individual has provided a statement of disagreement under paragraph (3)(c), the person storing the records:

                     (a)  must make the statement part of the records of the individual; and

                     (b)  in any subsequent disclosure of the disputed portion of the genetic information, shall include a copy of the statement and may include a statement of the reasons for not making the requested amendment.