This blog post was reviewed and updated in March 2025. 

The Intersex Trust Aotearoa New Zealand (ITANZ) has previously approached our Office for guidance on an issue faced by many intersex/ira tangata people in Aotearoa New Zealand. ITANZ is part of an intersex advocacy movement and works to improve awareness, information, education and training about intersex people.

ITANZ raised the issue that some intersex people struggle to access their medical records. In some cases, this might be because the records had been destroyed or were no longer available. Retention of and access to medical records is a legal requirement - not just for intersex individuals but for everyone, no matter their medical history.

Intersex people are defined as people with variations in sex characteristics, who are born with one of many conditions where their sexual anatomy or their chromosomes or hormones do not fit within typical binary conceptions of male or female.

The recommended medical approach in the latter half of the twentieth century was to treat intersex patients with ‘normalisation’ procedures, including surgery in infancy or early childhood, and to raise the individual according to their normalised sex, often without providing full information to the patient as they grew up. Many intersex people in Aotearoa speak of experiences in which they, and sometimes their families, grew up entirely unaware that they were intersex.

Over the past 20+ years, leading health professionals internationally have advocated for talking with children and young people in age-appropriate ways about their diagnosis and any treatment they might have had. The extent to which this more open practice has been taken up in Aotearoa seems to be variable, so some people will have grown up knowing about their diagnosis and treatment, while others will not.

Access to health information

In general, patients have a right to access their own personal information. This is no different for intersex people. Rule 6 of the Health Information Privacy Code (HIPC) requires that where a health agency holds health information in such a way that it can readily be retrieved, the individual concerned is entitled to have access to that information. Information can be withheld for a limited number of reasons, such as when disclosure would likely prejudice that person’s physical or mental wellbeing.

The conventional ethical requirements of truth telling and legal requirements of informed consent to treatment apply equally to intersex people as to anyone else. Open communication with patients and families is therefore essential. However, a significant hurdle some intersex people have experienced is that the health professions have not retained the medical records of those early procedures.

Retention of health information

The HIPC governs storage and security, access, and retention of health information. Rule 9 says that a health agency must not keep that information for longer than is required for the purposes for which the information is used. However, it also specifies that an agency can retain information if it is necessary or desirable for the purposes of providing health services to the individual concerned.

The HIPC must be read together with other legislation governing health records and medical ethical recommendations:

• The Health (Retention of Health Information) Regulations require all health records to be kept for at least ten years from the last date of treatment or care.
• The General Disposal Authority established by Archives New Zealand under the Public Records Act 2005 applies to public health records and requires DHBs to retain paediatric health care records for a minimum of 20 years from the date of care, or until the child has reached 25 years old.
• The Medical Council of New Zealand also recommends that “retention of records for longer than the minimum of 10 years is recommended for children with significant problems or patients with conditions in paediatrics, psychiatry, obstetrics, and gynaecology, orthopaedics or other problems likely to persist in the long-term”. (Document opens to PDF, 569KB).

Any retention policy should take into account the importance of not disposing of information before the individual has had the opportunity to understand their situation and seek their medical records. We would also suggest that other treatment records, including any non-surgical interventions, should as best practice be kept for an extended period of time at least until the patient is able to request access to their records as an adult. Any health issues intersex people face throughout their lives can only be understood and properly treated with access to and understanding of their full health information.

Difficulties in access

If intersex people face difficulties accessing their medical information or health records, they can complain to the agency’s privacy officer or, if they are unable to resolve their concerns directly with the agency, can bring their complaint to our Office for resolution.

Health Information Privacy Code, health

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