Privacy Commissioner Marie Shroff has strengthened the Health Information Privacy Code 1994 to improve legal protections around newborn babies’ bloodspot samples.  These samples are collected as part of a national newborn metabolic screening programme, also called the heelprick or Guthrie Test. The samples are held permanently unless parents request their return.  The amendment will restrict how information derived from the samples may be used and disclosed.

“DNA testing is getting cheaper and faster all the time and that makes national bloodspot collections more valuable.  Because of this it is possible someone in the future will want to use the collection as a national DNA database.  If this were to happen, trust in the programme would be severely damaged.  To protect this important programme, which saves dozens of lives each year, we want to give parents confidence their babies’ blood samples aren’t going to be misused,” said Ms Shroff.

The changes, which lock in administrative protections developed by the National Screening Unit, came after consultation and met with support from submitters.

The Code amendment also changed the rules for disclosure of health information about serious threats, reflecting a recent Privacy Act amendment. 

“Deciding whether to disclose personal information obtained in confidence, to avert a threat, is always a difficult exercise.  The changes mean that health providers can now feel more confident about whether to release information.  They can look at how serious a threat is, how likely it is to occur and how soon it might happen, before deciding to disclose to someone who can help prevent it,” Ms Shroff said

Ms Shroff said there had been two other technical changes to the Code, allowing non-profit emergency health record provider MedicAlert to use the National Health Index number, and making it easier for health organisations to use a national health provider register. 

ENDS

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Background

• Amendment 7 will come into force on 30 April 2013.
• The change to disclosures about serious threats is based on sections 4 and 5 of the Privacy Amendment Act 2013, and stems from recommendations made by the Law Commission in its review of the Privacy Act.