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Genetic technology and healthcare

The fourth event in our Speaker’s Science Forum series for 2023 was held on 19 Hōngongoi July at Parliament. Dr Robert Weinkove discussed the latest advances in CAR T-cell therapy to target blood cancers and Professor Justin O’Sullivan provided an overview of precision health and its capacity to prevent, diagnose, and treat disease with great accuracy for individuals and their whānau.

Weinkove and OSullivan Q&A

Directing immune cells against cancer: Aotearoa’s first CAR T-cell trial

Dr Robert Weinkove, Clinical Director, Malaghan Institute of Medical Research, and Haematologist, Te Whatu Ora Health New Zealand

CAR (chimeric antigen receptor) T-cell therapy is a one-off treatment of curative potential for certain blood cancers and involves re-engineering patients’ own immune cells to target cancer. It is a standard of care overseas, but it is not yet funded in New Zealand. The Malaghan Institute is working to change that by establishing CAR T-cell manufacture and treating 24 New Zealanders to date with a new CAR T-cell product in a first-of-its-kind trial for New Zealand. On-shore CAR T-cell therapies offer a significant opportunity for cancer services in Aotearoa.

Rapid genetic testing and what it means for the future of healthcare in Aotearoa New Zealand

Professor Justin M. O’Sullivan, Director, The Liggins Institute, Waipapa Taumata Rau | The University of Auckland

"Currently in New Zealand, we treat our population for the most common causes of illness and death. Our system does this reasonably well and for the best of reasons – to maximise the budgetary impact. However, approaches to medicine are changing. DNA is not everything and there are many other technologies contributing to precision medicine. But, the fruits of the human genome sequence, both technological and clinical, are beginning to be realised. While it is still early in the trajectory, these changes are beginning to impact New Zealanders. Perhaps the best-known example is our ability to track our ancestry with a simple test where you spit in a tube and send it away for sequencing. The gimmickry of this test hides the power of what the technology can do and the social and Te Tiriti o Waitangi issues that are apparently effortlessly glossed over.

"Our understanding of how genetic changes within our DNA actually impact our risks of disease is rapidly changing. This is in part driven by technologies – sequencing and analytical (e.g., artificial intelligence). In New Zealand, we have new sequencing facilities that have been established and have the power to sequence human genomes overnight, while streaming the sequence in almost real time for analysis. Not only is this fast, but it is cheap (<NZ$1000) which means you can sequence and compare the DNA from a trio (i.e., mum, dad and a sick child), for example, to identify the changes that are likely contributing to the child’s condition.

"Our goal is to translate this technology to enable hospital-bed-to-diagnosis for critically ill children in one day. This will empower clinicians and whānau to deal with many conditions (>400 rare diseases) where there are readily available treatments. It won’t solve everything; some instances will still require a change in management – but it will be informed and clear why this is happening to provide a degree of closure for the families. For other conditions, there will be high-tech solutions where methods like CRISPr can be used to repair genes (e.g., mutations in genes that cause Metachromatic Leukodystrophy and Duchenne Muscular Dystrophy). This technology has far-reaching impacts including: 1) on New Zealanders who have rare diseases, shortening their diagnostic journeys and the impacts of the unknown on them and their whānau; and 2) in cancer for diagnosis, prognosis, treatment, and monitoring.

"So, what are the problems? Well despite the promise of equity, these technologies are currently dependent upon biased databases where the majority of exemplar genomes are of European ancestry. Māori genomes are not well represented, despite efforts by Genomics Aotearoa and others, to address this. Te Tiriti o Waitangi and the UNDRIP confirm our obligation to ensure Māori governance of their own DNA and associated information. In addition, if we are to make it work then we must have social licence and data accessibility must be FAIR (Findable, Accessible, Interoperable, and Reusable) and we must demonstrate CARE (Collective benefit, Authority to control, Responsibility and Ethics) for the rights of our citizens.

"It is important to act now. The future is now, and these technologies are already available to our communities – and not just as gimmicks about your ancestry, but for tests that include things like fidelity. Moreover, the technologies (and variations of them) are accessible for citizen science – without regulation. But regulation and legislation is very important as New Zealand does not have a law supporting genome information non-discrimination.  Without this, insurers can ask for and ‘discriminate’ on the basis of information in your DNA – if you know it."