Next NZFBOC Trust Meeting
virtual on 03 Dec 2024 at 19:00
NZFBOC Group
NZFBOC 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
o Meet Te Tiriti o Waitangi legislative obligations to protect the interests of Māori to provide effective, responsive, patient-centred services to achieve health equity.
o To 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
o Support research
o Enable Networking
o Inform Guidelines and Standards
o Establish and support Regional and National Recommendations
o Support Implementation of Guidelines, Standards and Recommendations in the whole of New Zealand
o Provide Expertise, Information and Education
o Work towards a nationwide coordinated service provision and establishment of a registry / systematic data collection including ethnicity data.
o Collaborate with Ministry of Health, District Health Boards and Cancer Control Agency
o 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 to join.
Against Genomic Discrimination Aotearoa
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.
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.
AGenDA introduced this discussion in a September 2021 article in “The Conversation”:
The issue was further elaborated on in a March 2022 editorial in New Zealand Medical Journal (Open access, PDF available to all).
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” - New Zealand Medical Journal. (Open access, PDF available to all).
https://assets-global.website-files.com/5e332a62c703f653182faf47/6445c0d131b072824a0c018f_6116.pdf
Moving into 2024, AGenDA hope to take this issue further by discussing this issue, and potential resolutions, with the Financial Services Council (FSC).
Update 17.10.2024
Contracts of Insurance Bill has passed its 3rd reading
https://www.legislation.govt.nz/bill/government/2024/0041/latest/DLM1488402.html
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).