The Intersex Trust Aotearoa New Zealand (ITANZ) recently approached our office for advice on an issue faced by many intersex people in 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 are not the standard male or female.
The recommended medical approach in the latter half of the twentieth century was to treat patients with ‘normalisation’ procedures, including surgery, and to raise the individual according to their normalised sex, often without providing full information to the patient as they grew up.
Over the past 15-20 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 New Zealand 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.
Internationally-agreed ethical principles of practice for management of intersex disorders confirm that open communication with patients and families is essential, and the process of disclosure should be planned with parents from the time of diagnosis. However, a significant hurdle some intersex people have experienced is that the health professions have not retained the medical records of those early life procedures.
Retention of health information
The HIPC governs storage and security, access, and retention of health information. Rule 9 requires that a health agency must not keep that information for longer than is required for the purposes for which the information is used, but 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:
Any retention policy should take into account the importance of not disposing of information before the individual has had opportunity to understand their situation and seek their records. We would also suggest that other treatment records, including non-surgical intervention, should as best practice be kept for an extended period of time at least until the patient is able to request access to their own records as an adult. Intersex patients may face issues related to their condition well into adulthood, which can only be understood and properly treated with access to and understanding of their full health information.
Difficulties in access
If intersex people face difficulty accessing their medical information or health records, they can complain to the agency’s privacy officer or can bring their complaint to our office for resolution.
Image credit: Chromosomes 1 by Zappys Technology Solutions.