The Bill provides for greater transparency around Assisted Reproductive Technology (ART), including expanding the information available to donor-conceived individuals born of gamete – sperm and ova – donation.
The Bill allows individuals conceived prior to 2010 to access non-identifying information about donors where records exist, and bans the destruction or falsification of such records.
The Bill also loosens restrictions to donated sperm and ova, acknowledging the disproportionate impact of existing regulations on same-sex families and infertile men.
As the Minister for Health noted when introducing the Bill last week, these are complex policy areas requiring sensitivity, compassion and a reasoned approach.
As assisted reproductive technologies evolve, so too must our regulations and laws to protect all those involved: donor-conceived individuals, donors themselves and the many intending parents using ART to make their families.
Not all donor-conceived individuals will want or need to access information about the people that helped conceive them.
However, it is important that we provide as much assistance to those who do, whilst balancing those needs with donors’ rights to privacy.
While we’ve made great strides in opening up adoption and acknowledging the importance many people place on connecting with their family of origin, many donor-conceived individuals have struggled with the lack of information about donors.
They’ve often-times been left to grapple with the deeply personal and emotional complications around relationships to donor parents, and for many, their genetic or medical history remains a question mark.
The 2010 law made advances in opening up transparency around gamete donation, including the keeping, storage and access to records, as well as ending anonymous donations.
But those laws don’t operate retrospectively and are cold-comfort for donor-conceived individuals born prior to 2010 with an interest in finding out more about their biological heredity.
Under current regulations, since 2010, donor records are stored by NSW Health at a Central Registry; while for those born before 2010, the only recourse for information is to access a voluntary register.
There are significant doubts about the integrity of the records and whether the system of IVF clinics maintaining records and being the sole vehicle for information is effective or appropriate.
I welcome that this Bill goes some of the way to further establish the right of donor-conceived individuals to apply for the release of non-identifying information about their donors: -
Noting on birth certificates accessed by applicants over 18 years of age that there may be further information available for them about donors is a positive step.
I also welcome that this Bill will ban the destruction or falsification of records.
These measures move to ensure donor-conceived individuals have more information about their medical and genetic histories, with far reaching implications for their personal health and for public health as a whole.
I do note, however, the criticisms forwarded by groups representing donor-conceived individuals, who argue that this Bill doesn’t go far enough: -
By backing down on the 2013 Parliamentary Inquiry’s recommendation to create a central register, managed by a Government agency, the Government has capitulated to the IVF industry;
They are deeply suspicious and doubtful of the capacity of IVF clinics to store and maintain these important records and point to alleged falsification and secrecy;
They also note this Bill delivers far less in terms of similar legislation recently implemented in Victoria, whereby a Government agency manages all records and facilitates information requests and counselling;
They are concerned that the measures to provide information on birth certificates is only voluntary;
And they are deeply concerned at the lack of consultation from the Government when it came to developing law that affects them in such a deeply profound and personal way.
I also acknowledge the importance of balancing this move towards openness with a donor’s right to confidentiality.
We must respect that people choose to donate gametes for any number of reasons and that personal circumstances change over time.
Those who donated prior to 2010 - many of whom did so believing no-one else would ever know about it - deserve to have their privacy protected, while allowing for access if all parties choose.
It’s also important to acknowledge the critical shortage of sperm and ova in Australia:
Demand for sperm in particular has risen dramatically, with no associated rise in supply, due in part to the ban on anonymous donation.
The existing regulations dictating the time-limits gametes can be stored and used, as well as the so-called 5-woman limit, have contributed to the problem.
I would urge the Government to look at ways to encourage greater rates of gamete donation to assist the increasing number of families looking for alternative ways to create a family.
I welcome the changes in this Bill that extend the time-limit of storage and use to fifteen years and which redefine the 5-woman limit to a 5-family limit.
This second measure is imperative because it removes the negative impacts experienced disproportionately by lesbian couples and infertile men looking to create a family.
The current regulations are a good example, I think, of how we can make laws in this place that are unknowingly discriminatory and I welcome the Health Minister’s commitment to getting this done.
I was recently contacted by constituents – a lesbian couple – who had accessed donor sperm to conceive their child.
Years later, they planned to conceive a second child using the same donor but carried by the second partner.
They were told they couldn’t do so because the sperm had already been accessed by 5 women, even though one of those women was in the relationship.
For them, the fact they’re children could not be biologically related was a cause for considerable distress and the current regulations did not account for the structure of their family.
Expanding the regulations to now allow five families to access gametes – as opposed to individuals - resolves this issue and again, I want to warmly thank the Minister for Health for specifically pointing out the anomaly in the legislation and the reason for making this change.
What is clear is that families are made in lots of different ways, something I obviously respect and celebrate.
While we need to balance the interests of all those involved in ART-assisted conception, the right for donor-conceived individuals to access information about the identity of their donor cannot be ignored and we must always put the interests of children first.
This Bill moves us in that direction.
I put on the record, however, the strong concerns of donor-conceived individuals and that amendments to strengthen the onus and penalties on IVF clinics are necessary to improve access to donor information.
I also believe it would be far, far better that clinics be made to provide records to the existing central register.
I support this Bill, understanding there is more work to be done.