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News from NZFBOC

NZFBOC announces merger with The Gift of Knowledge

28 September 2025
 

Cancer charities join forces to support 1 in 250 Kiwis affected by genetic breast and ovarian cancer risk; releases moving short films featuring impacted families. 

 

Two hereditary cancer charities are joining forces to support New Zealand patients and whānau impacted by genetic risk for breast and ovarian cancer, as well as the health professionals who care for them. 

 

The merger of The New Zealand Familial Breast and Ovarian Cancer Trust and peer support group The Gift of Knowledge is announced in Hereditary Cancer Awareness Week (marked in the UK and US 29 September - 5 October).

 

Each year, an estimated 170 New Zealanders are found to carry an inherited faulty gene that significantly increases their risk of developing breast or ovarian cancer, with BRCA1 and BRCA2 among the most well-known. Once identified, navigating the health system can be complex and involves many challenging decisions.

 

Going forward as a merged entity, the key focus areas of The New Zealand Familial Breast and Ovarian Cancer Trust (NZFBOC) include:     

  • Awareness: the launch of New Zealand-based patient and whānau videos telling real, moving stories of two families affected by BRCA, their loss, and the life-saving decisions they face including preventive surgeries. View the first two videos here: www.nzfboc.org/video-hub.

  • Peer Support: offering much-needed peer support services through face-to-face meet ups and a private Facebook group with 500+ members.

  • Education: Providing educational resources for consumers and health workers

  • Support for professionals: facilitating a Special Interest Group for health professionals and researchers, and hosting conferences to foster networking and knowledge-sharing

 

NZFBOC Trust Chair Dr Simone Petrich says “NZFBOC has a core purpose of improving outcomes for whānau by working closely with clinicians, researchers, families and communities across three key areas: education, awareness and equity. This merger enables us to expand peer support, support professionals in the field and grow cooperation and knowledge about familial breast and ovarian cancer in Aotearoa New Zealand”.

 

Gift of Knowledge founder and newly appointed Cancer Society CEO Nicola Coom says “I established the Gift of Knowledge in 2010 soon after finding out I have the BRCA1 gene mutation, and losing my mother and other family to ovarian cancer. At the time there was no information or support available in New Zealand. I’m delighted that this much-needed peer support will now be under the umbrella of NZFBOC, and that this important work will continue.”

 

NZFBOC Trustee Jody Bews-Hair, who features in the film series with daughters Zoe (19) and Emma (18) says, “Our family has been ravaged by genetic cancer, causing the premature deaths of my grandmother, father and sister, and affecting many others. Knowing about BRCA has been life-saving for me, and now these decisions - to get tested and deal with the outcome - are in front of my daughters.”

 

Jody’s niece Apryl also features in the films - she tested positive for the BRCA2 gene mutation at the age of 18, the same year her mother died from breast cancer. At only 22, Apryl underwent a preventive double mastectomy and reconstruction.

Advocating for a ban on genetic discrimination in insurance

August 2025

NZFBOC Trustee Jody Bews-Hair featured in interviews with Newstalk ZB and Stuff:

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​​​​​​​​​​​Read the AGenDA argument for the total ban on genetic discrimination in insurance:

Listening to Young New Zealanders:
Informing the Future of Familial Cancer Support

June 2025

Between December 2024 and March 2025, the NZ Familial Breast & Ovarian Cancer Trust conducted an online survey in cooperation with peer support group Gift of Knowledge. 

 

The aim was to better understand the experiences and information needs of young New Zealanders impacted by familial cancer. The survey invited participants aged 16 to 30, and attracted responses primarily from those in the 26–30 age group.

 

The majority of participants identified as female, lived in urban areas (80%), and most identified as NZ European/Pākehā. This highlights the need to better engage with young Māori and Pasifika communities to ensure their perspectives and needs are heard.

 

A key goal of the survey was to learn more about how young people first become aware of familial cancer in their families and where they turn for information. One-third of respondents reported becoming aware between the ages of 10 and 13, though the age of first awareness varied widely. Most reported that parents or primary caregivers were their main source of information, followed by general practitioners (GPs) and online support groups. The results also highlighted opportunities to strengthen the role of healthcare professionals.

 

Only 14% of respondents rated their GP as “very knowledgeable” about familial cancer and related risks or options. While most had family members already connected with Genetic Services, three participants indicated that their GP had never discussed these services with them. In addition, 88% were not recommended any websites or support groups by their GP, suggesting a gap in signposting useful resources.

 

When seeking information, most respondents turned to websites such as the NZ Breast Cancer Foundation and the NZ Cancer Society, pointing to a need for increased visibility of resources specifically addressing familial cancer. Online formats were strongly preferred, with websites, articles, videos, brochures, and podcasts identified as helpful ways to access information.

 

The survey also explored testing for familial cancer gene mutations with 66.7% of respondents reporting that they had already undergone testing—many as soon as they turned 18. Of those not yet tested, only one indicated they did not intend to be tested in the future.

 

These insights will help guide the Trust’s ongoing efforts to develop youth-focused resources, provide information for our frontline healthcare professionals, and improve access to relevant, supportive, and reliable information for all young people affected by familial cancer in Aotearoa.

Against Genomic Discrimination Aotearoa (AGenDA)

NZFBOC is a member of the AGenDA (Against Genomic Discrimination in Aotearoa) coalition, which seeks to limit insurance companies’ access to personal genetic information. AGenDA is a New Zealand coalition of individuals and organisations who want to ensure that people can get tested and access their genetic information, and in particular any indications of possible health risks, without consequence.

Update May 2025

​On Thursday, 15 May 2025, AGenDA met with the new Minister of Commerce and Consumer Affairs, Scott Simpson. along with Tom Simcock, Manager of Financial Markets, Ministry of Business, Innovation & Employment (MBIE).

 

A consultation paper is currently being developed, and a formal consultation period will last approximately eight weeks. Conclusions from this process will be presented to Cabinet towards the end of the year, followed by a recommendation to the Minister. This timeline supports implementation ahead of the next general election in 2026.

 

AGenDA is continuing to work closely with MBIE officials to ensure they have access to the relevant information as they develop their consultation paper. It was agreed that AGenDA will collaborate with Todd Stephenson—ACT’s Health spokesperson and a member of the Finance & Expenditure Select Committee—to organise a genomics education session for Ministers.

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The Finance & Expenditure Select Committee previously oversaw the Contracts of Insurance Bill and its associated regulations, including Subpart 4A on Genetic Testing, which requires insurers to comply with regulations made under Section 86B.

 

It is anticipated that the upcoming consultation document will present a range of options. As before, AGenDA will advocate for a complete ban on genomic discrimination.

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Update October 2024 

The Contracts of Insurance Bill has passed its 3rd reading on 17 October 2024 - more here.

 

Genetic test means (a) a test that analyses any DNA, RNA, or chromosome for any purpose including the prediction of disease or vertical transmission risks, or monitoring, diagnosis, or prognosis (regardless of the source of the DNA, RNA, or chromosome); or (b) a test that analyses any component of gene expression (for example, a protein) or any metabolite for the purpose of detecting or predicting genotypes, phenotypes, or genetic variants (whether or not there are other purposes for the test) relevant contract means a life policy or contract of health insurance (including a proposed life policy or contract of that kind).

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About AGenDA

Against Genomic Discrimination Aotearoa, or AGenDA, was formed in 2021 by a group of New Zealand clinicians, academics, scientists, lawyers, and representatives from Māori, Pasifika, medical charities and patient groups. The primary goal of AGenDA is to address the issue of genomic discrimination by the health and live insurance industries that exist in New Zealand.

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New Zealand is falling behind other developed nations with similar healthcare systems in this regard. In 2017, Canada introduced a ban on the use of genetic test results to discriminate in any area, while in 2019, the Australian life insurance industry introduced a five-year self-regulated moratorium on the use of genetic test results.

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AGenDA introduced this discussion in a September 2021 article in “The Conversation”, and the issue was further elaborated on in a March 2022 editorial in New Zealand Medical Journal.

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In 2023, a group of AGenDA members produced an article with the first qualitative and quantitative data assessing the experiences of healthcare professionals in New Zealand with genetic insurance discrimination. New Zealand Medical Journal: “Genetic discrimination by insurance companies in Aotearoa New Zealand: experiences and views of health professionals”.

NZFBOC Special Interest Group

 NZFBOC Special Interest Group is a collaborative group of professionals and consumer representatives working in the field of Familial Breast and Ovarian Cancer in New Zealand.

NZFBOC sets out to:

  • Meet Te Tiriti o Waitangi legislative obligations to protect the interests of Māori to provide effective, responsive, patient-centred services to achieve health equity.

  • Achieve equitable health outcomes by reducing the rate of preventable familial breast and ovarian cancers and improving care in the fields of risk assessment, detection, diagnosis, prevention, surveillance, treatment and psychological support

  • Support research

  • Enable networking

  • Inform Guidelines and Standards

  • Establish and support Regional and National Recommendations

  • Support implementation of Guidelines, Standards and Recommendations in the whole of New Zealand

  • Provide expertise, information and education

  • Work towards a nationwide coordinated service provision and establishment of a registry / systematic data collection including ethnicity data.

  • Collaborate with Ministry of Health, District Health Boards and Cancer Control Agency

  • Collaborate with other Groups directly involved in care provision involved e.g. Genetic Health Service NZ, Breast Special Interest Group, New Zealand Gynae Cancer Group, Psychosocial Oncology New Zealand, Consumer Groups

 

​​Please contact simone.petrich@southerndhb.govt.nz or emma.felix@ccdhb.govt.nz if you are interested in joining.

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