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Genetic Privacy and Non-discrimination Bill 1998 [2008]

Part 3 Collection, storage and analysis of DNA samples

12   Collection of samples

             (1)  Except as otherwise provided by law, a person may collect a DNA sample from an individual for genetic analysis, only if the person:

                     (a)  obtains the written authorisation of the individual in accordance with section 16; and

                     (b)  provides the information to the individual in accordance with section 15; and

                     (c)  provides the notice of rights and assurances in accordance with section 14; and

                     (d)  collects the sample in accordance with the authorisation and notice of rights and assurances.

13   Storage of DNA sample and conduct of genetic analysis

                   Except as otherwise required by law, a person may store or conduct a genetic analysis of a DNA sample from an individual, only if the person:

                     (a)  has the written authorisation of the individual and the notice of rights and assurances has been provided; and

                     (b)  stores or conducts the analysis of the DNA sample in accordance with the authorisation and notice of rights and assurances.

14   Notice of rights and assurances

                   The person who collects the DNA sample for genetic analysis must provide the individual, prior to the collection of the DNA sample, and any other person upon request, with a written notice of rights and assurances that contains the following information and assurances:

                     (a)  that the DNA sample will be used only as authorised in the written authorisation; and

                     (b)  that the individual has the right to order the destruction of an identifiable DNA sample at any time; and

                     (c)  that the DNA sample will be destroyed upon the completion of the genetic analysis or the genetic test, unless the individual has consented in writing to further use of the sample; and

                     (d)  that the individual may specify another person as the person authorised to make decisions regarding disposition of the DNA sample after the death of the individual and, if any person is so designated, that the individual should notify the facility in which the DNA sample is stored; and

                     (e)  that the individual has the right to examine records containing genetic information, to obtain copies of such records, and to request amendment of such records; and

                      (f)  that researchers may be granted access to a DNA sample only as specified in the written authorisation of the individual; and

                     (g)  that the collection, storage and analysis of the DNA sample and the genetic information characterised from the sample are protected by this Act, and that an individual whose rights under this Act are violated may seek redress as provided for in this Act; and

                     (h)  about the availability, or the lack of availability, of optional genetic counselling.

15   Information to be provided to the individual

                   Prior to the collection of a DNA sample from an individual for genetic analysis, the person who collects the sample must inform the individual, in language understandable to the individual:

                     (a)  that consent to the collection of the DNA sample is voluntary; and

                     (b)  about the genetic information that can reasonably be expected to be derived from the genetic analysis; and

                     (c)  about the implications of genetic information derived from the genetic analysis, for the individual and the family members of the individual; and

                     (d)  about the ways in which the genetic information derived from the genetic analysis will be used; and

                     (e)  about the information that the individual can expect to receive on completion of the genetic analysis; and

                      (f)  about the extent of the right of the individual to have the DNA sample removed from a research study and, if possible, to have the genetic information characterised from the DNA sample destroyed; and

                     (g)  about the right of the individual to revoke consent to the genetic analysis at any time prior to the commencement of the genetic analysis; and

                     (h)  that revocation of consent for genetic analysis does not absolve the individual of responsibility for all relevant costs of the genetic analysis; and

                      (i)  that the genetic analysis may yield information that should be communicated to a family member of the individual; and

                      (j)  about the existence of, and protections afforded by, this Act; and

                     (k)  about the availability, or the lack of availability, of optional genetic counselling.

16   Authorisation to collect, store and analyse DNA samples

             (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 collect the DNA sample; and

                     (c)  the authorisation must state the tissue to be collected and the method of collection; and

                     (d)  the authorisation must include a description of all authorised uses of the DNA sample; and

                     (e)  the authorisation must indicate whether the individual permits the sample to be retained after the analysis is completed, and if not, how the sample is to be disposed of after the analysis; and

                      (f)  the authorisation must include provisions that permit the individual to consent to:

                              (i)  use of the DNA sample for research; and

                             (ii)  commercial use of the DNA sample, with a waiver of, or a provision for, economic benefit to the individual; and

                            (iii)  if the individual consents to use under subparagraph (i) or (ii), use without identifiers, or use with individual identifiers or codes retained, of the DNA sample; and

                            (iv)  notification, if individual identifiers or codes are retained, about information resulting from such use that may have implications for the individual or a family member of the individual; and

                     (g)  the authorisation must comply with additional provisions requiring informed consent by human subjects in research.

             (2)  The authorisation must be retained for the period during which the DNA sample is collected, analysed and stored.

             (3)  A copy of the completed authorisation must be provided to the individual.