Australian Privacy Foundation

Submission to the Human Gene Patents and Genetic Testing Advisory Group
Department of Health and Ageing
 
7 November 2005

Our attention was recently drawn to the Newborn Screening Consultation Document, seeking comments by 11 November 2005. We note that the proposed guidelines are in part a response to recommendations 19-1 & 24-1 by the Australian Law Reform Commission in its 2003 report 'Essentially Yours'.
 
I regret that we have not had time to respond to this Consultation Document in detail - as an all volunteer Association we are more than usually swamped by the volume of privacy intrusive measures currently being proposed by various levels of Government, and deserving comment.
 
However we would like to offer the following brief comments. 
• 	The Australian Privacy Foundation is in favour of nationally consistent laws governing the collection, storage, use, disclosure and disposal of genetic samples and the information derived from such samples.
• 	Anecdotal comments made to us by new mothers suggests a degree of pressure on mothers to consent not only to the newborn screening, but also to indefinite storage, as if the two issues were not separable.
• 	The process of seeking consent should be conducted prior to childbirth, not in the first few days following childbirth when parents are at their most vulnerable.  Prior discussions (and a proper system for recording the mother's decision to provide or withhold consent) will be more a robust mechanism for obtaining informed consent than conversations held immediately after childbirth.
• 	The process of seeking consent should ideally be split between:
(a) 	consent to test,
(b) 	consent to store the samples / test results short-term (say 2 years) for quality control / auditing purposes,
(c) 	consent to store the samples / test results short-term (say 2 years) for medical research purposes, and
(d) 	consent to store the samples / test results long-term for any other purpose (including law enforcement).
 • 	However we appreciate the practical difficulties the above may pose, and suggest that at the very least, the default position should be that:
 (i) 	there be written consent, or at least a written record taken of verbal consent (stored in the mother's medical file), to test, and that this consent can be implied to include the storage and use of the samples / test results for quality control purposes for no more than 2 years, unless the parent pro-actively opts out of purpose (b), in which case the samples / test results should be destroyed as soon as the test results are communicated to the parent, and
 (ii) 	during the 2 years the samples / test results cannot be used for research, EXCEPT for those records for which express, written consent is obtained from the parent for purpose (c), and
 
(iii) 	after the 2 years have expired the samples / test results must be destroyed or rendered permanently de-identified, EXCEPT for those records for which express, written consent is obtained from the parent for purposes (c) and/or (d).
 
In short: opt-out of short-term use for quality control, but opt-in for other purposes, whether short or long-term.
 
Should you wish to discuss this matter further, please do not hesitate to contact me as below.
 
Regards,
Anna Johnston
 
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Anna Johnston
Chair, Australian Privacy Foundation
 
T: (02) 9432 0320
M: 0400 432 241
E: chair@privacy.org.au
W: www.privacy.org.au