The choice to have children can be fraught with medical, financial and ethical hurdles.

Mitchell first noticed something was wrong when his right foot suddenly started to lose feeling, becoming stubborn and unresponsive. A year later, he could barely feel the ground beneath him. A creative director now in his late 20s, Mitchell was eventually diagnosed with a rare genetic neuropathy that would change everything – including how he imagined his future family.

For many New Zealanders, genetic conditions carry more than just medical implications. They present difficult choices and complex ethical dilemmas, against the backdrop of a public health system with limitations that can leave families feeling abandoned.

Kate Neas, national clinical director for Genetic Health Service New Zealand, says there are three primary forms of genetic testing available in the public system. Diagnostic testing is for individuals showing symptoms of a genetic condition, predictive testing is for those who are well but have a family history of a known genetic mutation, and carrier testing is for those who may carry a recessive gene that could be passed on to children.

For those who qualify, the process begins with a referral from a GP or specialist to Genetic Health Service New Zealand. Patients undergo genetic counselling, where they discuss family history, risks and testing options with a clinical geneticist or counsellor. This process helps families understand the implications of genetic information and make informed choices.

If testing is approved, samples are collected (often a blood test) and sent for analysis. Results can take months – sometimes longer for rarer conditions. A positive diagnosis may connect individuals to support groups, medical specialists or family planning services, but ongoing psychological support is not always guaranteed.

While some tests are publicly funded, many are not. One example is preconception carrier screening, which tests for a broad range of inherited conditions and is free to anyone planning a pregnancy in Australia. In New Zealand, however, the test is only publicly funded for certain specific genes, and only for those with a family history or high-risk ancestry for specific conditions. For those who aren’t eligible and wish to do it privately, it can cost upwards of $1,000. 

Publicly funded preimplantation genetic diagnosis (PGD) and IVF – where an embryo is tested for serious genetic conditions before it is implanted into the uterus – are only available for conditions deemed “severe”. Even then, a 50% chance of a child carrying the gene or developing the condition, as identified by carrier screening, is a minimum requirement. Many families fall through the cracks, unable to access the necessary support.

“In New Zealand, we try to allocate resources based on likelihood and impact. We have limited funding, and that means not everyone who could benefit from testing gets referred,” Neas says.

While access to testing is one challenge, engagement with it is another. Genetic health is not just a clinical matter, it is also influenced by cultural values, particularly for Māori and Pasifika communities.

Genetic testing infrastructure in New Zealand often relies on overseas laboratories, raising concerns around data sovereignty, especially for Māori and Pasifika families with a long-standing distrust of medical institutions due to historical mistreatment and systemic inequities. The idea of DNA samples being sent overseas adds another layer of hesitation.

Beyond privacy concerns, Polynesian communities often approach genetic health through a whānau-centred lens, where decisions are made collectively rather than individually. Whakapapa is deeply significant, and for some, altering or intervening in genetic inheritance raises spiritual and ethical concerns.

For some, a genetic diagnosis can carry stigma – potentially affecting perceived mana within their community, creating anxiety about “bad genes”, or forcing families to confront hereditary conditions they would rather not acknowledge. For others, genetic testing is seen as an act of empowerment, providing knowledge that allows for informed decision-making and proactive health management.

The family of singer Stan Walker is one Māori whānau who have been outspoken about their genetic condition – a cancer-causing gene now referred to by some as the “Walker gene”. The family’s openness with their journey has been instrumental in helping to remove the stigma associated with genetic conditions.

Andrew Shelling, director of the Centre for Cancer Research at the University of Auckland, emphasises that bridging these cultural gaps is crucial. “We need more Māori and Pasifika-led genetic research and better engagement with communities to ensure genetic testing is seen as a tool for whānau wellbeing rather than a clinical imposition.”

When Mitchell and his partner began to consider starting a family, they were forced to face a tough reality. They did not want to traverse the rigmarole of IVF treatment, so PGD was not an option. After years of delaying fatherhood, Mitchell and his partner decided to conceive naturally. “I told myself, I live a good life even with my condition. Maybe my child could too.”

When his daughter was born, Mitchell made a request to staff at Middlemore Hospital that she be tested for his condition. However, the hospital refused.

“They came back and said no,” he says. “The paediatrician even started lecturing me on parenting – saying I should just raise my child to be whoever they were meant to be.”

Publicly funded genetic testing for newborns is not automatic in New Zealand. Neas explains that it’s only offered when there are clear, immediate health implications. “We prioritise conditions that impact childhood healthcare, but we don’t test for adult-onset conditions unless there’s a pressing reason.”

For Mitchell, the decision was nonsensical. “They know my condition exists, they know it’s genetic, but they don’t want to know if my daughter has it?”

Now, three months into fatherhood, Mitchell is determined to find a way to get her tested. “I want to know so I can prepare. I’m not asking for a designer baby. I just want to know.”

Jaime Christmas, chief executive of the NZ Amyloidosis Patients Association, understands this struggle all too well. Her late husband Aubrey carried the genetic disorder hereditary ATTR amyloidosis, and though they had suspicions there was something genetic causing premature deaths in his family, medical understanding and genetic awareness was limited in the 1990s.

“With hope, we started a family,” Jaime says. “We thought maybe it would skip a generation or that a cure would be available by the time our children were older.”

Today, their four adult children must decide whether to get tested, knowing treatments exist but are unavailable in New Zealand. “They are navigating questions of genetic discrimination, future planning, and medical access,” Jaime says. “It’s an incredibly tough road.”

Genetic testing can carry several hidden consequences, including insurance discrimination. Shelling has been at the forefront of lobbying against genomic discrimination, where insurance companies can deny coverage or increase premiums based on known genetic risks.

“My daughter is 30, and she’s afraid to get tested for the BRCA gene,” Shelling says, referring to the mutation linked to hereditary breast and ovarian cancer. “If she finds out she’s positive, she could be refused life insurance or face outrageous premiums.”

Currently, New Zealand has no laws protecting individuals from genetic discrimination. Unlike Australia, where insurers cannot use genetic results against policyholders, Aotearoa remains in legal limbo. Advocacy groups argue that without legislative changes, many will avoid testing altogether for fear of financial repercussions.

When asked what New Zealand needs to improve in genetic health, both Neas and Shelling say more public funding for preconception and reproductive genetic testing is needed. Alongside this, they emphasise a need for genetic education for doctors to improve referrals, the establishment of more onshore genetic testing facilities to address data sovereignty concerns, and stronger protections against insurance discrimination to encourage testing without fear of financial repercussions.

For parents like Mitchell, the wish is simpler: more choices, more transparency and more support. Mitchell says he isn’t asking for miracles – just the ability to make an informed decision about his child’s future. In an era when genetic science is rapidly advancing, he asks why New Zealand is still leaving families in the dark.