Aotearoa’s donor conception framework: changes needed now

By Helen Nicholson, Counselling Team Manager

This year, many donor-conceived children born since  the 2004 Human Assisted Reproductive Technology (HART) Act was enacted turn 18, raising questions around the current donor conception framework and ultimately, whether the HART Act is working.

The 2004 HART Act has provided the regulation for  clinics who provide assisted reproductive treatments and procedures. The Act has enabled a sound framework for practice: 

  • It ensures that people who donate their gametes (i.e. eggs, sperm) and embryos, or who offer to be surrogates, do so within a model of altruism.
  • Creating a system where plans to build or create a family, which are particularly complex, can be peer reviewed and fertility clinics can seek ethical oversight. 
  • It has provided an opportunity for some donor-conceived people and their families to have access to information and contact with a donor if they wish, via Births, Deaths and Marriages (BDM) and the HART Register (a record of people conceived from sperm or egg donations made at a New Zealand fertility clinic, and their donors), or via the clinic with which the parents/parent had fertility treatment. The fertility clinic can  also help with facilitating a meeting with the donor or other recipient families, if that is agreed to by all parties involved.
  • Helping people make connections with others with whom they share a genetic link. 

However, there is an opportunity to make some legislative changes to the 2004 HART Act that will help ensure our donor-conceived people and their whānau are being supported.

For some donor-conceived people, there are no records in New Zealand being kept. We are seeing this in those conceived by home insemination arrangements, via a traditional surrogate, and those conceived by donors in clinics based overseas. 

Our concern is that the current structure is inequitable and the system is creating two different cohorts of people: Some donor conceived people (those conceived in New Zealand through a clinic) can access information and some can’t (those people conceived through private and international arrangements).  

Home insemination arrangements are not recorded on the HART Register, as the arrangement happens outside of a clinic. These arrangements can vary with some families using a known donor, such as a friend, and others using an unknown donor who they may have found through forums and independent websites. Some donors and recipients choosing home insemination want to be able to record the donors’ information legally but are not able to. 

Instead, information for donor-conceived children in these arrangements is reliant on the parties maintaining their own contact, which is not always possible. For these private arrangements, we would like to see a mechanism or process put in place in the HART Register that allows independent donors to officially register their information so donor conceived children can contact them in the future if they wish. 

Additionally, if possible we need to be able to record international donors on the Register. There is no mechanism to do this now. People who use donors from international clinics may not have access to donors identifying information in the future if the country the treatment happened in has no donor register. If donor details were able to be recorded in New Zealand, it would enable donor conceived people to have access to important information in the future.

In our work we  have met with couples who would like to have their surrogate acknowledged in a  formal record in some ways. They are proud of the way their whānau is made and grateful to their surrogate. There could be an opportunity for gestational or traditional surrogates’ data to be kept on a surrogacy register like the HART Register. In the case of traditional surrogacy, a link could be made between registers so the genetic connection is captured as well.

A further improvement to the existing framework would be to review the recommended limit to the number of families a donor can make via a clinic, and consider legislating this. Currently, the limit is 10 and this is a guideline only (as provided by the Sector Guidance document for Ngā Paerewa Health and Disability Services Standard NZS 8134:2021, Criterion 1.10.4). 

Although it is a strict guideline that clinics must adhere to, legislation would make a strong statement regarding Aotearoa’s position on family numbers. It is important to note that all the clinics in New Zealand have policies regarding family numbers which limit numbers to between five and seven families depending on the provider.

Lastly, an area for change could include improving information recorded on birth certificates. An addendum to indicate that there is information recorded on the HART Register for a donor conceived person to access would create transparency. While parents are strongly encouraged to tell their child of their donor conception and most do, they are not required to by law. 

There is still a minority of donor-conceived children who are therefore unaware of the valuable information available to them about their genetic lineage, such as the records held on the Register at BDM.

At Repromed, we are increasingly seeing more complex modern families, with unique donor and surrogacy arrangements. We believe in providing everyone with the best possible care that fits with their needs. And to achieve this, it’s important to highlight the gaps in the current system. 

We believe that everyone should have the opportunity to sew all the threads of their whānau together, to locate themselves within their families and be able to make connections if they wish. We believe that these are important components to health and wellbeing, as well as a basic human right.

We want to ensure that with the HART Act, we are providing a robust donor conception framework that supports everyone.

 

Published in March 2023.

Megan Black

Nurse Manager

DipNurs

Megan leads the nursing team through the continually changing face of IVF. She works in a multidisciplinary team, providing the essential organization between the doctors and laboratory and ensuring communication between all departments.

Megan started her IVF nursing career in the United Kingdom, working in two large London clinic’s before returning to New Zealand. She is also the Secretary of Fertility Nurses of Australasia.

I love working with people and see nursing as a vocation, not a job. I usually spend my downtime absorbed in a good book and planning my next travel adventure.