Submission on Gene Technology Bill

Rare Disorders New Zealand (RDNZ) supports the intent of the Gene Technology Bill but recommends that the legislation provides for:

• The unique needs of people with rare disorders.
• Appropriately balanced safety measures to prevent any potential harm to individuals with rare disorders (who may be more vulnerable to unintended consequences of gene technology).
• Timeliness of decision making to prevent avoidable mortality and re-invention of the wheel.
• Mechanisms to guarantee that individuals with rare disorders, regardless of their ethnicity or socio-economic status, can benefit from gene technology advancements.
• Compassionate access mechanisms.
• Meaningful consultation with the rare disorders community.

Read our full submission here.

View Rare Disorders NZ's oral submission featuring an individual with lived experience and Dr Hilary Longhurst who is a member of Rare Disorder NZ's Clinical Advisory Committee below.