Media release from privacy commissioner Marie
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
"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
"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
Public submissions can be made until 13 April 2012. For more
details, see the proposed amendment and information paper.
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