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The 10 year limit on storing embryos and gametes is causing some patients heartache. (Image: Tina Tiller)
The 10 year limit on storing embryos and gametes is causing some patients heartache. (Image: Tina Tiller)

SocietyMarch 4, 2024

Why this grandmother wants the law changed for her grandson’s sperm

The 10 year limit on storing embryos and gametes is causing some patients heartache. (Image: Tina Tiller)
The 10 year limit on storing embryos and gametes is causing some patients heartache. (Image: Tina Tiller)

The Human Assisted Reproductive Technology Act requires embryos and gametes to be destroyed after 10 years. Critics say the law is outdated, arbitrary and ‘unduly harsh’, and they’re fighting to have it changed. 

Ann Chapman, a retired nurse and grandmother in her 70s, says she may just live long enough to see a certain piece of legislation amended for the sake of her grandson’s sperm.

Chapman’s grandson Alex* was diagnosed with leukaemia when he was 16. Chapman says he went through “ten months of pain, fear, illness and of feeling the sickness of leukaemia.” Once on the brink of death, the now 26-year-old, though infertile, is healthy and in a budding relationship.

Before starting the multiple courses of chemotherapy, Alex had some sperm cells stored, preparing for the day he may want to start a family. But towards the end of last year, a letter arrived in the mail from the fertility clinic to inform him that his sperm was about to be destroyed. Because of a change of address, Alex had missed the first letter. 

According to the Human Assisted Reproductive Technology Act 2004, in vitro embryos and gametes (egg and sperm cells) may only be stored for 10 years, and from the first day following that 10 year period, “no person may for any purpose store, manipulate, or use the gamete or embryo.”

Any embryos or gametes stored for over 10 years require an application to the Ethics Committee on Assisted Reproductive Technology (ECART) for extended storage. Because Alex missed the first letter, by the time he applied, it was too late. His request to extend the storage time for his sperm was declined.

Ann Chapman is fighting on behalf of her grandson to have the HART Act changed. (Photo supplied)

Transferring the samples to Australia became the only option. By the end of last year, the family had spent over $25,000 to get a designated courier that could carry live gametes and store them correctly to move his sperm to Australia. If Alex wanted to use those gametes, IVF treatment would have to happen overseas. Chapman, who was the deputy chair of the MidCentral District Health Board for 19 years, says that her family had the resources and knowledge to act. “But not all families are so lucky. Not all families would know how to go through the process to overturn such an arbitrary decision, nor the stamina to see it through.”

The process was extremely stressful for the family. “It’s bad enough going through the stress of a young man nearly dying and the joy of coming alive again.” She says it’s a human rights issue that “a group of people are making a decision about whether a young person can have a family or not, in isolation from that person and family.”

Chapman wants to see the HART Act amended to provide flexibility for the 10-year limit. “I can understand that [limit] for older people, but it seems unduly harsh if you lose your ability to have a child when you’re 16.”

Jeanette MacKenzie, the scientific director of Fertility Plus, said the time limit is not usually an issue for patients so long as they remain contactable. “Clinics keep in regular contact with patients and advise when they need to apply to the ECART for an extension,” she says. “Patients just need to keep in touch with their IVF clinic and let them know if they change contact details. If a young child has stored gametes, their parents need to pass on essential information to the child about keeping in touch with the clinic.”

The family were advised of the 10-year limit when Alex was first diagnosed, but Chapman says “it was positioned as a formality.” With her medical background, Chapman was the contact person in the family, but as Alex became an adult, she was no longer the first point of contact and wasn’t updated. 

Jeanette MacKenzie, the scientific director of Fertility Plus, says people doing IVF need to understand the relevant law. (Photo supplied)

For people who may want to undergo IVF treatment, MacKenzie stresses the importance of understanding the HART Act. While it may be lawful in one country to store gametes and embryos for longer than 10 years, they cannot be imported to New Zealand if they’ve been stored for even a day over 10 years. “In these cases, patients may choose to travel back to the country where gametes are stored to have treatment, which is often expensive,” she says.

From a clinical perspective, there’s no reason why a gamete or embryo shouldn’t be stored for over 10 years. Once frozen, “they are in a stable state and do not deteriorate,” says MacKenzie.

The reasons for the time limit are ethical rather than clinical: people conceived by IVF from gametes or embryos stored longer than 10 years will be less likely to know their genetic parent, the reasoning goes, as they will be more likely to have passed away. MacKenzie says this is important for passing on relevant medical information to the donor-conceived person.

For example, if a gamete or embryo was stored for 20 years, by the time that child turned 18 and was able to find out information about their genetic parents, 38 years would have passed since the first day of storage. 

Calum Barrett, chair of the Advisory Committee on Assisted Reproductive Technology (ACART), says another reason for the time limit is that it prevents complicated intergenerational situations, such as genetic siblings being born 50 years apart. “The siblings might not easily relate to one another, due to generational differences,” Barrett says about that hypothetical scenario. “And it is likely that the younger siblings will live a long time without their older siblings due to the big age difference.”

But Barrett agrees that a blanket 10-year limit may not be appropriate in all circumstances. Situations where people are storing gametes for fertility preservation before undergoing medical treatment are becoming more frequent, he says. The field of assisted reproductive technology is moving swiftly, child cancer survival rates are increasing and social egg freezing is becoming more popular.

One reason for the time limit is to avoid complex intergenerational situations, says ACART chair Calum Barrett. (Photo supplied)

One of ACART’s roles is to monitor the decisions of ECART to ensure they fall within ACART guidelines. Barrett is part of a working group amending the guidelines for extending the storage of gametes and embryos. 

“Generally speaking, ECART will always approve an extension request,” he says. Between 30 June 30 2021 and 30 June 30 2022, 124 of 126 applications to extend the storage period of gametes, embryos or tissue were approved. 

The two main circumstances where an extension won’t be granted are (1) if all parties involved haven’t provided their consent to the extension and (2) if the application has been submitted after the expiry of the storage period. Once an extension is approved, the HART Act doesn’t specify any further limit on storage time or on the number of times an extension can be granted.

But despite most extension requests being approved, the legislation doesn’t allow for an application received after the 10-year limit, like Alex’s, to even be considered.

Barrett is aware of situations where people have had to take their gametes or embryos overseas due to late applications, and New Zealanders who have stored gametes/embryos overseas for longer than 10 years in line with the laws in that country, but were legally unable to import these into New Zealand. 

Lani Eagle, who leads the counselling team at Repromed, says the application process for storage extensions is straightforward. It involves the patients providing information about themselves, how many embryos or gametes are stored, and why they want their storage extended. The main issue is timing an application to reach the next ECART meeting before their 10-year expiry, she says. The committee meets up to six times a year.

According to Fertility Associates, only around 3% of its patients reach the 10-year storage limit: the vast majority of embryos are used by patients within 10 years. 20-25% of patients who reach the 10-year point request the return of their embryos. 

Eagle says that, while it’s “really cut and dried” for some, disposing of a gamete or embryo can symbolise the end of a journey, changes in relationships, or acceptance of a particular goal or arrangement. “There’s this view in the community that for a lot of people this is the beginning of a life point. Especially when you’ve been on a fertility journey for a length of time, it feels like you may be letting go of something that was really difficult to achieve.” 

Her clinic gives clients the option to take embryos or gametes home in a solution. “Some people want to do a ceremony or some kind of ritual that lets go of their particular journey,” she says. Some people bury the embryos or gametes in places of significance to them, store them in a box at home, or make jewellery with them, she says. Others leave them to the clinic to deal with. 

On a personal level, Barrett and his partner have three embryos stored which they won’t use for fertility treatment because their family is complete and donation isn’t right for them. But that doesn’t mean the 10-year time limit doesn’t affect him. “Even though we have made these decisions… if we part with our embryos, then that’s a definitive full stop on our family,” he says. “[It’s] something we need a bit of time to come to grips with.”

Barrett says disposing of embryos or gametes is not something you know how you will feel about until you’re in the situation yourself. “The 10-year storage limit, and whether there is a need for change, is one area that ACART is working on right now,” he says. ACART is planning to release a public consultation document later this year which will help inform their advice to ministers. 

*Name changed for privacy.

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