In the middle of this year, digital personal health records will change from an opt-in scheme to an out-out scheme. This means that, at some point, you or your doctor will activate a digital health record for you unless you choose to opt out.
At the moment, only around 20% of Australian have digital health records, which means that they are not used routinely. As the number of people with digital records increases, it is likely that they will increasingly be used as a way of documenting and tracking our health.
This raises many ethical issues.
It is well documented that clinical practices in relation to intersex people were historically based on a model of concealment, including the concealment of diagnostic and intervention details from patients. A recent article by the New Zealand Office of the Privacy Commissioner states that change to these practices is variable and poorly documented. We expect that this variability is also a feature of Australian clinical practices. This raises concerns that accurate reports of personal historical information may never be digitised. It is possible that digital health records may contain material unfamiliar to the individuals they relate to. We hope that digital records will never provide the first meaningful disclosure of diagnostic or procedure information to any individual.
Some historic and continuing medical practices violate the human rights of people born with intersex variations. It is uncertain how, or whether or not, this issue will impact on the documentation of these practices in digital records.
At the point at which a digital health record is activated, it will be automatically populated with two years of Medicare and PBS data. Health records will begin to be uploaded and updated from the point of activation. This means that people whose early medical records have been lost will not find that information restored. While records must provide an accurate reflection of health information, this process should provide an opportunity you to share decision making with your doctor about what is uploaded.
You can hide specific medical records if you wish, and current rules state that this will apparently only be visible to the doctor that created the record. You can also create a PIN access to your health record. In certain limited circumstances, including emergency and legal contexts, then the details in your record may be disclosed to third parties.
If you are in a situation where misconceptions about intersex variations or other reasons mean that you prefer not to disclose an intersex trait to a partner or other family member, and in particular if you otherwise routinely share personal information, then consider whether or not you wish to have a digital health record.
It is possible that the inclusion of comprehensive health data will lead to inappropriate questions about your body, including questions irrelevant to a current health issue. This is an experience that some intersex people already report. It is possible for you to limit which healthcare providers can see your health information but there are situations where this may cause unnecessary complexities or burdens on you.
As yet, there is no clear policy position on the use of anonymised aggregated health data (“secondary data”). Intersex Human Rights Australia has historically raised concerns about community and clinician differences in opinion about the purpose of clinical research on intersex people. Clinical research, for example, is often intended to assess cosmetic genital appearance, justify early genital surgeries, or provide data to facilitate genetic testing including genetic deselection. Community priorities may instead focus on access to appropriate healthcare services, long-term outcome data, documentation of human rights violations, the use of appropriate control groups, and socio-economic research. In the absence of clear guidance and the absence of community-based participatory research, you may wish to opt out of such usages of your health data.
Please consider any risks to you and your family, as well as any benefits. You can opt out if you choose, and you can cancel a digital health record or re-activate a record as you prefer.