The State Government has admitted many Victorian parents are unaware DNA samples taken from their child at birth were to be stored in the gene bank.
The DNA samples -- called Guthrie Cards -- are held by privately-owned company Genetic Health Services.
The cards have been collected with parental consent via a heel prick from every Victorian aged under 42 years.

Since population-wide testing began in the 1960s, hospital staff have been required to obtain verbal consent from parents and guardians before performing the procedure.

A child's birth is a special moment - the labour, the joy, the chaos. And about 48 hours into a new life, each baby has a medical test that has saved countless children's lives.
Blood from the baby's heel is soaked into an absorbent card and then tested for a range of rare, usually treatable conditions. Most parents hear nothing more and life goes on.
But what becomes of the cards? In Victoria, they are tested and stored by Genetic Health Services Victoria, a company set up 16 years ago. It is paid by the State Government to do the tests, yet believes it owns the cards, which date from 1965. All Victorian babies were tested from about 1970.
The Parkville company ultimately controls who can get access to the blood, and DNA, of more than 2 million people born in Victoria. Its collection is the largest in Australia and the only one not in government hands.