4 ms·

It seems we have a similar issue in Australia... https://www.mja.com.au/journal/2011/194/6/newborn-screening-cards-legal-quagmire https://www.mja.com.au/journa

It seems we have a similar issue in Australia... https://www.mja.com.au/journal/2011/194/6/newborn-screening-cards-legal-quagmire https://www.mja.com.au/journal/2011/194/6/newborn-screening-... and this "19.16 In 1999, the Senate Legal and Constitutional Legislation Committee referred to newborn screening card collections as ‘inadvertent DNA sample banks’, noting that identified blood samples containing genetic material from almost all people under the age of 28 are currently stored in most States and Territories." https://www.alrc.gov.au/publications/19-human-tissue-collections/types-human-tissue-collections https://www.alrc.gov.au/publications/19-human-tissue-collect...

andreasley 8y ago
And in Switzerland [1] (text in german). Blood samples from newborn screenings are stored for 30 years. For the screening to take place, the parents' oral consent is required. Opting out of the screening or blood archival is VERY rare. Though personal information is destroyed after analysis, attribution is still possible using LIMS (an electronic laboratory database). As far as I understand, access to this data is generally restricted [2]. "If illnesses occur later, which can be clarified via tests on this sample, the responsible physician can request it from [Children's Hospital Zurich]. Part of the remaining material may also be used by the screening laboratory during quality control measures and for the development of new research methods. In this case, the samples will be anonymous, having undergone a procedure to make them unidentifiable." [3] [1] https://www.zh.ch/bin/ktzh/rrb/beschluss.pdf?rrbNr=1053&name=RRB-2017-1053&year=2017&_charset_=UTF-8 https://www.zh.ch/bin/ktzh/rrb/beschluss.pdf?rrbNr=1053&name... [2] https://www.admin.ch/opc/en/classified-compilation/20011087/index.html#a7 https://www.admin.ch/opc/en/classified-compilation/20011087/... [3] http://www.neoscreening.ch/display.cfm/id/100489/disp_type/dmssimple/pageID/80690 http://www.neoscreening.ch/display.cfm/id/100489/disp_type/d...

andreasley 8y ago

And in Switzerland [1] (text in german). Blood samples from newborn screenings are stored for 30 years. For the screening to take place, the parents' oral consent is required. Opting out of the screening or blood archival is VERY rare. Though personal information is destroyed after analysis, attribution is still possible using LIMS (an electronic laboratory database). As far as I understand, access to this data is generally restricted [2]. "If illnesses occur later, which can be clarified via tests on this sample, the responsible physician can request it from [Children's Hospital Zurich]. Part of the remaining material may also be used by the screening laboratory during quality control measures and for the development of new research methods. In this case, the samples will be anonymous, having undergone a procedure to make them unidentifiable." [3] [1] https://www.zh.ch/bin/ktzh/rrb/beschluss.pdf?rrbNr=1053&name=RRB-2017-1053&year=2017&_charset_=UTF-8 https://www.zh.ch/bin/ktzh/rrb/beschluss.pdf?rrbNr=1053&name... [2] https://www.admin.ch/opc/en/classified-compilation/20011087/index.html#a7 https://www.admin.ch/opc/en/classified-compilation/20011087/... [3] http://www.neoscreening.ch/display.cfm/id/100489/disp_type/dmssimple/pageID/80690 http://www.neoscreening.ch/display.cfm/id/100489/disp_type/d...