Dr. Joanna Rose:

I will respond to that. I am friends with a donor offspring in Denmark who is desperately trying to track down 64 families who have all used a donor who, after the event, has developed a fatal disease to which all those children are predisposed. There is nothing that requires the clinics to inform those families of that situation and that donor offspring has spent ten years trying to track down those families. Another friend in Australia has discovered that she has a predisposition to breast cancer, about which her donor informed the clinic. She and her half-sister through donor conception developed breast cancer but they were never informed of this predisposition by the clinic, despite the donor having returned to the clinic and asked it to inform those affected. It is very important that there be legal obligations. The Bill says they "may provide" medical information and may update, but it is not mandatory. Something is required in law which means that those people are accountable. Where people such as my friend, Narelle, die of preventable genetic diseases because of someone's negligence, people should be held to account.