29 February 2012

Privacy Commissioner Marie Shroff today announced proposed amendments to the Health Information Privacy Code. The proposals aim to improve protections for information obtained from newborn babies' bloodspot samples. These samples are held by the Ministry of Health's Newborn Metabolic Screening Programme.

'The information held by the screening programme needs to be used for the diagnosis of newborn children. The proposed amendments allow for other uses only under strict conditions - usually involving consent of the families concerned,' said Ms Shroff.

The amendments, which lock into law some administrative guidelines earlier adopted by the Ministry of Health, will allow some other uses of the information such as helping Police identify dead bodies.

'The proposed changes to the code will provide the public with reassurance that millions of bloodspot cards are not going to be turned into an involuntary DNA database,' said Ms Shroff. 'The screening programme does a fantastic job for newborns but improving legal protections for the information amassed is essential for maintaining long-term public trust and keeping faith with mothers and their babies.'

Another proposed code change would make it easier for health agencies to disclose patient information to prevent serious risk. The Law Commission's recent review of the Privacy Act recommended allowing disclosure of information about serious but not imminent risks. This recommendation is reflected in the Privacy (Information Sharing) Bill, which is currently before Parliament. The change to the code mirrors that proposed in the bill and will take effect only if the bill is passed.

The proposed code amendment will also make changes to the rules about assignment of unique identifiers for consumers and health practitioners.

Public submissions can be made until 13 April 2012. For more details, see the proposed amendment and information paper.

ENDS

For further information contact Cathy Henry on 021 509 735.

Notes for editors
The Health Information Privacy Code 1994 is a code of practice issued by the Privacy Commissioner under the Privacy Act 1993. It controls the collection, use and disclosure of health information by health agencies.

Bloodspot samples from newborns have been collected since 1969 to test for a range of treatable disorders. The Newborn Metabolic Screening Programme currently holds more than two million sample cards (sometimes referred to as 'Guthrie cards'), which are returned to parents on request.

In 2003 the Office of the Privacy Commissioner published a report outlining concerns around the potential for subsequent unauthorised use and disclosure of blood samples held on the cards.