Assisted Reproductive Treatment (Review Recommendations) Amendment Bill

Introduction and First Reading

The Hon. C. BONAROS (16:46): Obtained leave and introduced a bill for an act to amend the Assisted Reproductive Treatment Act 1988. Read a first time.

Second Reading

The Hon. C. BONAROS (16:47): I move:

That this bill be now read a second time.

It gives me great pleasure once again to introduce on behalf of SA-Best the Assisted Reproductive Treatment (Review Recommendations) Amendment Bill 2020. The effect of the bill will be to legislate recommendations made by Deakin University health law expert Associate Professor Sonia Allan OAM in her independent review of the Assisted Reproductive Treatment Act 1988, as tabled by the former Labor government on 29 November 2017.

One of the main recommendations of that review, as I am sure all members will now know, was for the establishment of a donor conception register. I am extremely proud to say that the donor conception register provisions were implemented as part of amendments that I moved to section 15 of the Assisted Reproductive Treatment Act 1988, which were legislated in the government's Surrogacy Act in November of last year.

This was a significant step in the right direction for the preservation of donor records in South Australia. That register will hold both identifying and non-identifying information of parties to donor conception treatment in South Australia. As we know, there is a requirement that it be established within two years from the passage of that legislation. While I applaud the apparent commitment of this government and the former Labor government to the plight of donor-conceived people and donors and their families in this state, there are of course a number of review recommendations that are yet to be legislated. I introduce this bill on behalf of the many South Australians who remain in search of a missing piece to a puzzle.

There are hundreds of boxes of puzzle pieces sitting in various locations in South Australia that need to be preserved. Donor-conceived people, donors and their descendants should at least retain the possibility of accessing valuable information in the future because without preservation an important piece of their personal puzzle may be lost forever.

The amendments are not a new concept. It is entirely appropriate that we implement the recommendations of the review, especially given that we have passed those measures aimed at establishing a register in this jurisdiction. As I have said before on the record, the amendments do not seek to legislate for the release of confidential information. That is a separate but more contentious issue and it is one that can be dealt with separately to the framework necessary for this model. Section 18 of the ART Act provides:

A person must not disclose the identity of a donor of human reproductive material except—

(aa) as required or authorised by or under this or any other Act; or

(a) in the administration of this Act; or

(b) in order to provide assisted reproductive treatment; or

(c) with the consent of the donor of the material.

This is not a question of revealing the confidential information of anonymous donors or recipients, so this is not a question of removing the rights of anonymous donors. The National Health and Medical Research Council's (NHMRC) ethical guidelines on the use of assisted reproductive technology in clinical practice and research suggests that:

Clinics have a duty of care to all parties, especially to the persons born, to ensure that there is appropriate maintenance of records and data.

Consent can be presumed for donations of reproductive material since 2004 pursuant to the ethical guidelines of the NHMRC. Modern clinics must adhere to these guidelines. From all accounts, modern records have been sufficiently preserved in this state. Future access to identifying information is now presumed by donors and donor recipients at the time of donation and conception.

As I have said before, there are still thousands of historical donor records in South Australia requiring immediate preservation that are not covered by the current legislative regime. They exist in various locations in Adelaide and they hold the key to the genetic history of thousands of donor-conceived people and their donors.

Unfortunately, infertility, as we know, was shrouded with shame in the past and some donor records were deliberately destroyed. However, some records do exist. Some are in filing boxes, some are on Excel spreadsheets, some are scribbled in diaries or on random pieces of paper. It is important—indeed, it is imperative—to preserve them now. What we do with them in the future is for another day or, indeed, for the government of the day.

Why are the records so important? I think that speaks for itself. One of the first questions we are inevitably asked by a medical professional these days concerns our family history: 'Do you have a family history of cancer? Is there a history in your family of heart disease? Is there a history in your family of diabetes?' It is an important piece of the puzzle for any person to be able to identify potential genetic conditions or risk factors, and it is often at the forefront of a person's mind when they have their own children: 'Are there any genetic conditions I may be passing onto my child?'

The genes we are born with may increase our risk of developing certain diseases. A hereditary breast and ovarian cancer syndrome is characterised by a high inherited risk of those cancers. People with knowledge of this syndrome can take steps for themselves and their children to minimise the risk of developing these cancers through stringent monitoring, or other steps.

A genetic link has been found with colorectal and prostate cancer, amongst many other diseases. Heart disease, high blood pressure, Alzheimer's disease, arthritis, diabetes, cancer and obesity are all examples of multifactorial inheritance disorders proven to be caused by a combination of genetic and environmental factors.

Donor medical history is an extremely important blueprint for their offspring and, indeed, all their descendants. If you do not know who one of your parents is—whose DNA you possess—then you are left in limbo. You are left with questions. To at least have hope that someday some of those questions may be answered is what this bill attempts to do in part.

Though DNA was discovered in 1869, it has truly not been understood until recent times. The role genetics play in our present and future has only somewhat been uncovered, and as we continue to make medical advances they will become more and more important.

When many donor recipients were conceived in the early years of sperm donation our scientific and medical knowledge was less developed, and inheritable conditions were not necessarily thought of. At the time, little thought was given to just how important those records could be. Little consideration was given to the impact of the anonymity of a donor on the donor-conceived person. It is true that donors were anonymous, and this bill does not seek to legislate for people who wish to continue that anonymity to receive unwanted contact. In the event that this did eventuate one day, there would be an opt out clause for no contact.

There are many heartbreaking stories of donor-conceived people being denied access to family medical history, none more so than Narelle Grech. Narelle was a Victorian donor-conceived woman who passed away from bowel cancer in 2013 at the age of 30. Her submission to the Victorian Law Reform Commission in 2011 told of her 15-year search for answers:

I was diagnosed with Stage 4 bowel cancer following an emergency surgery...The first thing the doctors and surgeons asked me was: is there any family history of cancer in your family?...I am sure there was no family history of illness at the time that [the donor] donated but who is to say he simply didn't know...What if he or someone else has developed cancer since? What if he died from cancer himself?...What if my eight half-siblings are at risk of cancer? What if there are children whose aunty has bowel cancer? It's really quite important that they should know this if they are at risk. It's believed that in most cases where a person is diagnosed with bowel cancer under the age of 30 there is a genetic link.

As more time passes and medical research and developments improve even more, the importance of the medical history of donors will no doubt become even higher.

It is, of course, not just the person's vital medical history that these important records have the potential to uncover. Early 20^th century German-American psychologist Erik Erikson famously said, 'In the social jungle of human existence, there is no feeling of being alive without a sense of identity.'

As we have heard in this place before many, many times, many donor-conceived people struggle with their sense of identity or lack thereof. They often wonder if they have similar physical, temperamental and behavioural traits as their donor parent or their donor siblings. Most people look in the mirror and see the eye, hair or skin colour of a parent. Sometimes you recognise the height of a grandparent or that your walk is the same as your sibling's. Sometimes it is a random or quirky thing.

But a donor-conceived person, a person conceived perhaps 20 or 30 years ago, who has so many unanswered questions does not have that. In fact, as one donor-conceived person put it to me, it is like knowing only half of yourself. It is cruel to deny a person the opportunity to, at some time in the future, answer some of the questions they have. The yearning for answers is an extraordinarily difficult thing to live with and I think something that we all take for granted.

Donor-conceived people must be reminded of their missing piece of the puzzle in many areas of their life on a daily basis. What field do they work in? Do we like the same foods? Do I have any half-siblings? Do we look the same? Do we share the same physical and personality traits? It is like an unfinished dot-to-dot picture that is someone's life. Aside from the issue of the preservation of historical donor records, the bill also seeks to implement further yet-to-be-legislated recommendations of the review. Recommendation 16 reads:

The Minister should amend the statement of principle concerning the paramountcy of the welfare of the child within the Assisted Reproductive Treatment Act 1988 (SA) to include the wording that both the health and welfare of the child born as a result of A.R.T. is paramount.

Commonly known as the paramountcy of the welfare of the child principle, section 4A of the current act provides that:

The welfare of any child to be born as a consequence of the provision of assisted reproductive treatment in accordance with this Act must be treated as being of paramount importance, and accepted as a fundamental principle, in respect of the operation of this Act.

Parliament has recognised the interests of the child born as a result of ART must be placed above all others. The review recommended the paramountcy principle be strengthened to include the health of the child, specifically:

The current statement of principles does not explicitly include reference to health outcomes for the child.

In 1948, the World Health Organization defined health as 'a state of complete physical, mental and social wellbeing, not merely the absence of disease and infirmity'. Health encompasses the screening of donors, including their embryos and sperm, for heritable diseases, disorders and illnesses. It also recognises the need for research into long-term health outcomes of donor-conceived people. They overlap to some degree yet are a unique enough to both be required if the interests of the child are to be paramount as parliament intended. For those reasons, section 4A of the act should read:

The health and welfare of any child to be born as a consequence of this provision of assisted reproductive treatment in accordance with this Act must be treated as being of paramount importance, and accepted as a fundamental principle in respect of the operation of this Act.

I have a little bit more to go. I am placing this on the record again to save members the effort of having to go over previous Hansard records to refresh their memories as to why this legislation is so important. I do so because I have given a commitment to the families that I have spoken to over some time now and to those people who work in this industry that I will continue to do this until we get some change in this area.

On that front, the bill also seeks to provide the option of listing 'donor' as a child's father on their birth certificate, as recommended by the review. For a parent to have the option of listing that the genetic father of their child is a donor, rather than an unknown person, recognises that their child was not just fathered randomly. It is recognition that the birth of their child was a conscious choice. It also arms that child with information that they may well investigate further themselves by accessing the donor conception register. As I have previously mentioned, the bill seeks to preserve those records for these precise reasons. Recommendation 21 of the report reads:

The Minister should pass legislation prohibiting the destruction of any record that relates to donor conception, and the donation of gametes and/or embryos, as a matter of priority.

Despite this recommendation, and the other recommendations I speak of, being tabled in 2017, legislation has not been passed in this jurisdiction to implement them. The insertion of clause 16A reads:

A person in possession of a record or document relating to the provision of assisted reproductive treatment (other than a record or document to which section 16 applies) must ensure that the record or document is retained in accordance with any requirement set out in the regulations.

There is a maximum $50,000 applicable penalty. That provision will apply in relation to a record or document whether created before or after the commencement of this section. In that regard, it is retrospective in terms of the documents it applies to.

There are currently four registered clinics in South Australia, but only two of these existed prior to 2010, namely Repromed and its predecessors and Flinders Fertility. Though the register has not yet been established, clause 16A is most relevant to the two historical clinics with the most compromised record keeping. Repromed has changed owners and locations on a number of occasions over the years. Records are spread over three locations that we currently know of: The QEH, with records between the 1960s to 1987; the University of Adelaide, from 1987 to 2006; and the current owners of Adelaide Fertility Centre, from 2006 onwards.

There are 400 archive boxes stored by the state on behalf of The QEH. Thirty random additional boxes of records were discovered just prior to the review of 2017. Extensive sorting of their random contents will at some stage need to be undertaken to adequately decipher their contents and link data codes. As Repromed is now a shell company and no longer provides assisted reproductive treatment services, it is not bound by the NHMRC ethical guidelines. The University of Adelaide thankfully does, at this stage, continue to store pertinent information, including 895 entries of birth outcomes on spreadsheets, 156 different codes, 92 entries of egg recipients that resulted in 97 births, as well as nine entries of embryo recipients that resulted in 10 births with donor details also entered.

I am going into a great deal of detail here because there are professionals and individuals all around this jurisdiction who are doing this daily, going into this level of detail in an effort to ensure that the material that I am proposing be preserved here be preserved in an appropriate manner. Right now, all they have is their goodwill. They have no legislative framework for what they are attempting to do. It is just their hard work that is managing to keep these records from being destroyed, and so I think it is extremely important that we recognise those facts.

The University of Adelaide, as the previous owner of the shell company that once owned Repromed, also holds hard copies of patient files, including 67 possible sperm donor files—that is also 67 possible donor-conceived children. There are photocopied pages from a diary with names and codes, which may be the names of donors. Twenty-three donors and contact details are also listed. It is very valuable historical information that is being held randomly in an ad hoc manner across the state.

Some past records of Flinders Fertility have apparently been destroyed. There are some still available but pre-1988 records are less likely to have been retained as there was no legal requirement to do so. The state of historical donor record keeping has understandably left those seeking answers confused, distressed and extraordinarily tired. Some are traumatised that their records may have been destroyed, some are hopeful they may have been retained. Some have told me personally that they have physically sat across a desk with a person looking at a computer screen who has been able to access their codes or their data and has not been able to tell them anything about that data.

The 2017 review received many heartfelt submissions from donor-conceived people, donors and families. I have put some of those on the record previously. I have previously spoken in this place of Damian and Tiffany, and if anyone was present when Damian and Tiffany spoke at the forum that I co-hosted last year with the shadow minister for health and wellbeing, you could not help but be brought to tears by their stories.

I think the only silver lining, if you like, at that time was that in those days and subsequent to that passage of the surrogacy legislation, Damian met his biological father for the first time in his life. That was a moment that he had been fighting for for some 30 years and so it was quite timely in the sense that we had just passed for the implementation of that register. The hope, of course, is that at some point all historical records can be entered into the newly established Donor Conception Register, but in the meantime, as I have said, there are thousands of records sitting all over the place that need to be preserved.

Victoria has been at the forefront of modern 'right to know' assisted reproductive legislation in recent times. Victoria has given donor-conceived people and donors the right to apply for each other's identifying information, subject to the consent of the other party. Amendments which came into effect in 2017 in that jurisdiction gave all donor-conceived people the right to access information about their donor. Prior to that, that information could only be released with the donor's consent, as pre-1988 donations were made under conditions of anonymity.

From 1998, donors were made aware that their identities could be made available once the donor offspring reached the age of 18. Contact preferences are recorded for pre-1998 donors and donor-conceived people on the Victorian donor conception Central Register. By all accounts they have a record keeping system that is far superior to ours, and it has the backing of legislation.

Bearing in mind that the population of Victoria is more than three and a half times that of South Australia, the following data was provided in the 2019 report of the Victorian Assisted Reproductive Treatment Authority:

there were 565 births from donor treatments in the 2018-19 year, 427 of which were from sperm donors and 86 from egg donors;

113 applications for information were made to the Victorian Central Register (up 38 per cent on the previous financial year), and 39 per cent of those applications were from donor-conceived persons, 50 per cent from recipient parents and 11 per cent from donors;

51 of those applications related to pre-1998 donor treatment and 62 to post 1998;

22 applications were for identifying information only, 13 for non-identifying only information and the remaining 78 for a combination of both;

there are currently around 10,690 donor-conceived children registered on the Central Register; and

4,301 of the people registered are over 18 and are now eligible to apply for information about their donor.

I look forward to a time when the same access is available in this jurisdiction. There are other risks that I have spoken of in this place previously—risks that were outlined by donor-conceived children who appeared and spoke at the forum. They include the consanguineous risks, otherwise known as incestuous relationships, in South Australia, which is a particularly real risk considering our population.

There was one young lady who said, 'Every time I go to date someone, I stop and think twice about whether they may or may not be related to me, because I just don't know.' To date, that particular person has identified in excess of half a dozen siblings as a result of donor conception. We do not have legislation that restricts the donors-to-families ratio, though it appears the practice in South Australia is 10 families.

Donor recipients of the past sought out donors with specific ethnic or cultural backgrounds, which may mean their donor-conceived children have been raised in the same community. Donors often made their donations over a short space of time, increasing the likelihood of children being born around the same time. They possibly attended school together.

It is particularly concerning if you consider there was not a limit on how many South Australian children a man could father. Prolific sperm donors may have fathered upwards of 20 children each. Accidental incest is an avoidable scenario with the availability of information. NHMRC's ethical guidelines now require that registered ART clinicians take into the account the risk of a donor-conceived person having an inadvertent sexual relationship with a close genetic relative. That was not always the case.

Despite these modern guidelines, there is a real risk among donor-conceived persons that they could unknowingly enter into a relationship with a sibling or that their child could date someone who is one of their siblings. It is not unusual for these children to have up to 20 half-siblings. In the past, men have donated in multiple states. It is a possibility that cousins could connect. The psychological impact on a donor-conceived person that they could mistakenly enter a relationship with a half-sibling is enough to traumatise one's ability to enter into any meaningful relationships.

In this jurisdiction we always say that Adelaide is so small when you realise you know the same person as someone else, so I just ask members to imagine if you had to ask yourself if you might be related to every potential love interest that you met if you were one of these children. There are a number of submissions that have been made in relation to this issue which I will canvass further during the debate on the bill; submissions that relate specifically to the issue of incest and relationships between half-siblings and family members.

I remind honourable members again that the establishment of a register, the key recommendation, has now been passed in this jurisdiction with the support of the government and the opposition. We now must take those next steps in terms of implementing the other key recommendations of the Allan review, and that is entirely what the bill intends to achieve.

Debate adjourned on motion of Hon. D.G.E. Hood.