Exploring existing and deliberated community perspectives of newborn screening: informing the development of state and national policy standards in newborn screening and the use of dried blood spots Export

@article{citeulike:992981, abstract = {OBJECTIVE:Since the 1960s newborn screening (NBS) for several rare and serious disorders has been in place across Australia. Testing of a simple blood spot now enables the early detection of over 30 conditions. Policies across Australian states have diverged in some aspects of NBS, especially in the retention and further use of dried blood spots collected as part of the screening and attempts are underway to bring some further national consistency. Whilst this has initiated debate amongst health professionals and policy makers there is limited empirical evidence of wider community attitudes to such issues.METHODS:This research has explored the range and depth of views held by the wider community in New South Wales through moderated small group discussions. It has also assessed the range and depth of responses where the groups are reconvened after being given further information.RESULTS:The findings suggest that there is limited community awareness of the public health importance of NBS and especially that resulting biological samples are stored. Members of the wider community presented with opportunities to consider current procedures and policies appear reassured and to have high levels of trust. However there are clearly some groups who have concerns with the storage of dried blood spot specimens and perceive that these may be abused.POLICY IMPLICATIONS AND CONCLUSION:The findings will inform health professionals and policy makers as to the perceived benefits and future challenges NBS raises for the wider community. The findings have implications for improving current communications about NBS, maintaining public confidence and the development of state and national initiatives in genetic health.}, author = {Muchamore, Ian and Morphett, Luke and Stewart, Kristine B.}, citeulike-article-id = {992981}, citeulike-linkout-0 = {http://dx.doi.org/10.1186/1743-8462-3-14}, citeulike-linkout-1 = {http://view.ncbi.nlm.nih.gov/pubmed/17164009}, citeulike-linkout-2 = {http://www.hubmed.org/display.cgi?uids=17164009}, day = {13}, doi = {10.1186/1743-8462-3-14}, issn = {1743-8462}, journal = {Australia and New Zealand Health Policy}, keywords = {community, deliberation, disease, embryo, genetics, health, policy, standard}, month = {December}, number = {1}, pages = {14+}, posted-at = {2009-11-13 04:59:46}, priority = {0}, title = {Exploring existing and deliberated community perspectives of newborn screening: informing the development of state and national policy standards in newborn screening and the use of dried blood spots}, url = {http://dx.doi.org/10.1186/1743-8462-3-14}, volume = {3}, year = {2006} }

TY - JOUR ID - citeulike:992981 L3 - citeulike-article-id:992981 N2 - OBJECTIVE:Since the 1960s newborn screening (NBS) for several rare and serious disorders has been in place across Australia. Testing of a simple blood spot now enables the early detection of over 30 conditions. Policies across Australian states have diverged in some aspects of NBS, especially in the retention and further use of dried blood spots collected as part of the screening and attempts are underway to bring some further national consistency. Whilst this has initiated debate amongst health professionals and policy makers there is limited empirical evidence of wider community attitudes to such issues.METHODS:This research has explored the range and depth of views held by the wider community in New South Wales through moderated small group discussions. It has also assessed the range and depth of responses where the groups are reconvened after being given further information.RESULTS:The findings suggest that there is limited community awareness of the public health importance of NBS and especially that resulting biological samples are stored. Members of the wider community presented with opportunities to consider current procedures and policies appear reassured and to have high levels of trust. However there are clearly some groups who have concerns with the storage of dried blood spot specimens and perceive that these may be abused.POLICY IMPLICATIONS AND CONCLUSION:The findings will inform health professionals and policy makers as to the perceived benefits and future challenges NBS raises for the wider community. The findings have implications for improving current communications about NBS, maintaining public confidence and the development of state and national initiatives in genetic health. IS - 1 JF - Australia and New Zealand Health Policy SN - 1743-8462 TI - Exploring existing and deliberated community perspectives of newborn screening: informing the development of state and national policy standards in newborn screening and the use of dried blood spots VL - 3 SP - 14 KW - community KW - deliberation KW - disease KW - embryo KW - genetics KW - health KW - policy KW - standard AU - Muchamore, Ian AU - Morphett, Luke AU - Stewart, Kristine PY - 2006/12/13/ UR - http://dx.doi.org/10.1186/1743-8462-3-14 ER -