By Belinda Hawkins
When you go to see your doctor, you assume that he or she will keep an accurate record of that consultation. But that is not what happened at a public hospital in Sydney.
Australian Story reveals tonight that the Royal North Shore Hospital has launched an internal investigation into record-keeping practices in its former fertility clinic, after it discovered that a patient record had critical information removed.
In the 1980s sperm donors were recruited with the promise that their identity would remain a secret. It was an area of medicine that lay outside the law.
Hospitals and clinics devised their own way of recording which donor’s sperm was used in each pregnancy attempt.
To maintain the donor’s anonymity a system of coding was commonplace. Each donor was given a code, a record of the code and the donor’s details was kept at the clinic. The patient’s notes only recorded the code.
Breaking the code is close to impossible.
Tracking down code C11 in search for father
Victorian aeronautical engineer Dr Lauren Burns spent four years trying to find out more about her biological father, a man she knew only by his code, C11.
Had she cold-called every name she came across in a complex piece of detective work, Dr Burns might well have found him. But she did not want to startle a complete stranger. She wanted a third party to make the first contact to see if an exchange of information would be acceptable.
In 2009 the then Victorian governor, Professor David de Krester, broke the impasse. As a male fertility specialist he had treated Dr Burns’ father at the former Prince Henry’s Hospital in Melbourne.
When Dr Burns appealed to him as a last resort, Professor de Kretser dug up old records, found the donor, and wrote him a letter.
Tonight’s episode of Australian Story reveals Dr Burns not only finally got the chance to meet her biological father but she discovered she is part of a famous Australian family.
Altered paperwork hampers hunt for biological heritage
The case of ABC journalist Sarah Dingle could not be more different.
Ms Dingle was conceived in 1982 at the fertility clinic at Royal North Shore Hospital in Sydney known as the Human Reproduction Clinic, which was headed up by Professor Douglas Saunders.
When Ms Dingle was 27, her mother told her that she was conceived using donor sperm. The revelation came as a shock to the ABC journalist, who adored her father and still mourned his premature death.
“I went into a pretty bad place,” Ms Dingle told Australian Story.
“I would wake up in the morning or I’d come home from work in the evening and I’d look at my face in the mirror and I literally did not recognise my own face.”
Ms Dingle went in search of her biological heritage. What she found out came as a shock to her mother, Siew Dingle.
Without Ms Dingle’s consent, someone had cut out the donor’s code from the section of her record documenting Sarah’s conception and then attached the altered paperwork to a sheet of white paper, making the damage less evident.
“I couldn’t believe that a public hospital which was creating human life was actually going back and destroying the records of what they’d done,” Ms Dingle told Australian Story.
The hospital provided a statement to Australian Story, agreeing Ms Dingle’s case was a serious problem.
“Royal North Shore Hospital’s Health Information Services is deeply concerned after reviewing the medical record of Mrs Siew Dingle and finding incomplete donor codes in relation to the conception of her daughter in 1982.
“As a result our department has launched a full internal audit of all records of the hospital’s former Assisted Reproduction Treatment clinic. All health and clinical records held in public hospitals are subject to general requirements for retention and confidentiality.”
In response to questions put to him by Australian Story, the then head of the clinic, Professor Saunders said he did not accept responsibility for the removal of the donor code.
He added that he had no “personal knowledge of the code being removed and, if it was, when, by whom and in what circumstances.”
In 2002 IVF Australia took over a private clinic called Northshore ART which had been formed in the mid-90s by doctors from the RNSH clinic which shut down. IVF Australia is part of publicly-listed company Virtus Health.
Professor Saunders is a member of the human research ethics committee at IVF Australia.
‘A unique ethical environment’, says IVF Australia medical director
Medical director at IVF Australia, Associate Professor Peter Illingworth, told Australian Story “in principle the medical records are sacrosanct.”
“Once you’ve written a medical record it’s a critical record of that patient’s health and everything that has happened to that patient,” Professor Illingworth said.
“In this situation there was a unique ethical environment where they were doing this simply to protect the privacy of the donor. This was not carelessness it was carefully thought out … based on ethical priorities that applied at that time.”
Professor Illingworth says a case emerged of a donor who was found to have the HIV virus around the time Ms Dingle was conceived.
“From that time forward no claim I’m aware of ever obscured the link between the donor and the recipient’s records.
“And when we look back to the same sample of records we can see that very soon after Sarah’s conception the linkages are all very, very clear.”
But Ms Dingle told Australian Story she finds Professor Illingsworth’s explanation hard to believe.
“I find that very hard to accept, because I was conceived and born in the 1980s, not the dark ages,” she said.
“This was not a time of cowboy medicine.”
Donor anonymity vs patients’ right for complete records
Professor de Kretser set up one of the first insemination clinics in Australia after studying the practice in the United States in the late 1970s.
An anatomy lecturer at Monash University, Professor de Kretser recruited medical students to maintain the sperm bank at the clinic which adjoined the former Prince Henry’s Hospital in Melbourne.
The deal was the donor would get $10 to cover transport costs and the assurance his identity would remain anonymous forever.
Head of the former Prince Henry’s clinic, Professor Gab Kovacs, argues the coding system in itself was enough to ensure the anonymity of the donor.
He rejects the argument that the need for anonymity overrules the right of the patient to have complete records.
“It’s important to maintain those sorts of records – you never know what you might need in the future.”
According to Professor Kovacs, tampering with a patient’s record is “exactly the same as falsifying it”.
Dr Sonia Allan from Macquarie University’s law faculty agrees.
“One of the fundamental things that we need to do now and not tomorrow and not in a year’s time is to pass some kind of law protecting those records,” she said.
“And to make clear offences of people who destroy them, deface them or tear the corner off to get rid of a donor code or anything that might in the future actually be validly released to a donor-conceived person.”
Professor de Kretser contends he is happy to assist others get in touch with their donors; including Ross Hunter who was also donor-conceived at the Prince Henry’s clinic.
Protecting the rights of donor-conceived people
Dr Lauren Burns argues knowing who you are should not depend on the good will of a doctor.
She continues to advocate for legislation that would enable all Victorian donor-conceived people to know their donor’s name, and to utilise third parties to attempt to broker contact by mutual consent.
But Ms Dingle is calling for national legislation.
“It’s not good enough to leave it to the states and territories,” she said.
“Some states and territories don’t have any legislation regulating assisted reproductive technology.
“We are entering a point with fertility treatments and medical science where more people are choosing to do this. “There are more hybrid families being created and we’re not looking at the consequences.
“We are creating human life; we are sanctioning the creation of human life as a business. We should be regulating that.”
Children ‘not considered at all’, says Dr Burns
Dr Burns says donor-conceived children are the most vulnerable people in the fertility process.
“A lot of the structures that were put in place were just at the convenience of the adults – essentially, the people undergoing treatment and the donors and the doctors,” Dr Burns told Australian Story.
“The rights of the children who were being born, who were actually the most vulnerable people in the whole process, were really not considered at all. If they were considered, they were placed at the bottom of the pile.
“I think that in other situations, such as in family law, the overriding principle is that the rights of the child should be paramount. I think that we should apply that principle in this case as well.”
But no amount of legislation will solve the riddle of Ms Dingle’s DNA.
NSW MP John Barilaro, who was the head of a state law reform committee set up to investigate issues related to donor conception, wants an independent interrogation of all the records related to Ms Dingle’s case.
“Government could intervene … there could be a process that will be transparent and that Sarah would be comfortable with, [that] will lead to a result, whatever that result may be,” he said.
“What we want is transparency. We want to know, whatever authorities or agencies or organisations that were involved in the record-keeping, and then [had] access to that information …that they follow through on all those requests.”
Back in Victoria, Dr Burns’ personal journey is far from over. While developing a strong friendship with her donor’s children, she continues to search for three other half-siblings conceived using his donated sperm.
What took place at Royal North Shore Hospital means Ms Dingle’s search was over before it began.
In tonight’s episode Australian Story concludes its two-part special Searching for C11 with the stories of Sarah Dingle and Lauren Burns. Watch the program at 8:00pm on ABC TV.