Rapid Response

Genomics, Society and Policy Vol.1, No.3, 2005.

Comment on'New mothers' awareness of newborn screening, and their attitudes to the retention and use of screening samples for research purposes', by Angela Davey, Davina French, Hugh Dawkins & Peter O'Leary

Received from Professor Bridget Wilcken, The Children's Hospital at Westmead, Sydney, and the University of Sydney NSW, Australia.

Rapid Response

Angela Davey and colleagues address an important issue when they discuss parental awareness of the retention of newborn screening samples after the testing procedure is completed. This question is being examined in many parts of the world because of possible ethical conce27 March, 2006ons they draw from their study.

In the discussion they state that, "The strong support of maintaining the current W(est)A(ustralian) storage period of two years is to be expected". In fact, their own figures show that while 29.3 % of the 600 respondents supported this, 55.5% supported longer periods, including "21 years or more" and "indefinitely". (The remainder responded "as long as required" or were unsure). The authors later go on to state that, ".storage beyond a decade is unsupported", whereas their own figures show that 26% supported this option. It is hard to see how their interpretation of the figures obtained was reached. It is clear that the statements they make could be cited in other publications, although they seem unwarranted, and might therefore be unwittingly used in a misleading way.

Professor Bridget Wilcken

Reply

To the Editor,

We welcome Professor Wilcken's response to our paper and her contribution to the debate about appropriate retention periods for newborn screening samples. It is problematic whether samples should be destroyed after analysis and appropriately-related quality assurance procedures, or stored for opportunistic clinical applications or unspecified research. Therefore, we sought a broader community consultation in developing policy guidelines regarding the storage, retention and appropriate uses of newborn screening samples beyond the primary purposes for which they were collected.

As part of our study, we provided a range of options for new mothers to select their preferred retention period for storage of newborn screening samples. Support for periods of less than 2 years is to be expected because the study was conducted in Western Australia where newborn screening samples are stored for 2 years and respondents were informed of this local practice in the information sheet accompanying the survey. However, respondents did not feel adequately informed of the issues in order to make decisions about extended storage periods; hence support for two years is hardly surprising. We noted that the majority support was for limited storage periods (29.3% for up to 2 years and 29.5% for 3-10 years) compared to 26% who supported longer retention periods. In contrast to Professor Wilcken's representation of our data, 335 (70%) of 482 respondents who nominated a retention period, supported periods of no longer than 10 years, and only then, provided there is appropriate justification and if privacy and acceptable uses can be resolved in the first instance. Further, the issue of retention periods and secondary uses were not entirely discreet areas for investigation, and therefore the results reported for each variable interact with the other.

We hope that this paper will encourage others to examine and respond to their own community's attitudes towards newborn screening and the issue of card retention.

Angela Davey, Davina French, Hugh Dawkins, Peter O'Leary

Published online 13th February 2006