Our bodies and minds are not datasets
Why sharing health data with governments might not be such a great idea. Roz Bellamy writes
I have wanted to keep authorities away from my body since the age of 15, when I heard a Rabbi compare abortion to murder. When I turned 20, I read that Pope John Paul II had said that as society shifts away from God and the family, individual rights are “reduced to self-centred demands: the growth of prostitution and pornography in the name of adult choice, the acceptance of abortion in the name of women’s rights, the approval of same sex unions in the name of homosexual rights”. These words troubled me for many reasons, not least that I had recently come out as queer, and certainly as a feminist.
That same year, my first pap smear was done by a doctor who held deeply conservative, religious and homophobic views. I tried to find inclusive health practitioners who respect their patients’ privacy and are responsive to their individual needs. I became very wary about sharing information about my sexuality, gender identity and mental health with authorities. This was difficult as psychiatry, psychology and even basic medical care all involve divulging personal information.
For this reason, I chose to ‘opt out’ when the federal government launched My Health Record. While some friends and colleagues who work in public health, medicine or the pharmaceutical industry think that it is a good idea, I am fearful.
All I can think about is the way that marginalised groups might be at risk when sharing health and other data with health practitioners and with the government. As a bisexual and non-binary person, I approach any discussion of data and privacy, especially related to health, from a queer perspective.
There are many reasons that LGBTIQA+ people might want to keep their health and other data separate from the government. Sharing this sort of information may be risky for people with diverse sexual and gender identities. It brings up concerns about the need for agency and control over our physical bodies and mental health. Conversion therapy is still in existence; the World Health Organisation only recently reclassified gender dysphoria as a sexual health condition rather than a mental disorder; and stigma and criminalisation still abound for the most marginalised within queer and gender diverse communities, including First Nations people, people of colour, sex workers, drug users and people living with HIV.
Some of the issues that have emerged in relation to My Health Record remind me of when the same-sex law reform package passed through Parliament in 2008, providing same-sex de facto couples and families the same entitlements as opposite-sex counterparts. This impacted on the Pharmaceutical Benefits Scheme, the Medicare Safety Net and social security, meaning that some benefits increased while others were reduced. Centrelink announced that it would “investigate” same-sex couples if they failed to declare that they were in a de facto relationship.
I found this language anxiety-provoking. As a Jewish person with a family from the former Soviet Union, who were directly affected by anti-Semitism, Nazism and Stalinism, I have a great fear of governments keeping records of any demographic, personal and health-related information.
My greatest fears about privacy in relation to health data relate to my mental health. I can imagine that for other people in LGBTIQA+ communities, there are other concerns.
To gain an understanding of the fears that friends and acquaintances hold on this issue, I asked them about their previous medical experiences and their sense of body autonomy. Most of the people I spoke to are in their twenties and thirties, and many of their answers focused on issues around sex, reproduction and fertility. They brought up access to abortion, reproductive coercion, the morning after pill and contraception, egg donation and egg freezing, elective and involuntary hysterectomies, sexually transmitted infections and non-consensual condom removal.
Many of the people I interviewed had experienced distressing interactions with a health professional, who either overstepped their boundaries, made assumptions or judgements, or completely ignored their rights to make decisions for themselves and their bodies. I thought about how these abuses of power can lead to distrust of medical professionals, including pharmacists, who could gain access to individuals’ health data for clinical purposes through My Health Record.
I also thought about the complex relationship many people have to their bodies, and what might cause people to feel a lack of control and ownership. This is particularly important for people with disabilities and chronic diseases, for whom the right to privacy, the right to consent and the right to access information that enables them to make their own decisions can be critical.
This thinking was shared by individuals who represent organisations that support marginalised people. Electronic Frontiers Australia board member Justin Warren told me that serious concerns have been “raised by a wide variety of groups representing vulnerable people, such as those who have left (or are in the process of leaving) abusive relationships, people living with HIV, sex workers, and those with lower levels of access or ability with technology such as the vision impaired, the elderly, those living in remote areas, and Aboriginal and Torres Strait Islander people.”
As Warren said, “In its current form, MHR is not fit-for-purpose and there is a very real risk of harm to far too many vulnerable groups for us to consider the system safe for them to use.”
All health care planning, policies and initiatives must consider and address how the needs of marginalised groups and communities will be met. They must also consider digital inclusion, as the digital divide continues to grow in Australia.
Warren pointed out that the process of opting out requires “a fairly high degree of digital literacy that vulnerable groups often don’t have, through no fault of their own. It is hard to remove permission for sharing your medical information with researchers (you will also be opted-in to this when a MHR record is automatically created for you) if you do not have access to a computer or mobile phone.”
Asher Wolf, a data rights activist and journalist, says that Australia approaches this issue from the perspective that “data exists to help governments and businesses” as opposed to being owned by citizens.
According to Wolf, My Health Record can be considered a problematic project because the government recognised that people would not want to opt in if they understood some of the risks, so they made it very difficult to opt out. Particular groups of individuals, including those facing psychosocial issues like poverty, homelessness or instability, are “the least likely to be informed about [their] data rights and the threats associated with [their] data being misused”, Wolf told me.
Bernard Robertson-Dunn, the Chair of the Health Committee for the Australian Privacy Foundation, told me that “sharing your health data with your doctors is a good thing; you know why they need it and you can trust them.” He explained, however, that “giving it to the government is quite another; you never know what they will do with it and you don’t know what sort of government you’ll get in the future.”
In the same way that parents or guardians make decisions for us as children, there are others with power over our bodies. Religious leaders and doctrines dictate rules, medical practitioners make decisions about our bodies, and politicians govern our bodies through laws and policies.
It’s important to assert our ownership over our own health data, and insist on limits on the government’s power. Our privacy, and in some cases our safety, are at stake.
This article is commissioned by the UNSW Centre for Ideas.
Roz Bellamy is a writer, editor and researcher whose work has appeared in The Big Issue, Daily Life, Kill Your Darlings, Meanjin, SBS, Ten Daily and The Huffington Post. Roz’s work was shortlisted for the Scribe Nonfiction Prize in 2014 and won the Stonnington Prize for Poetry in 2016. Roz is a PhD student and casual academic at the Australian Research Centre in Sex, Health and Society, based at La Trobe University, studying the use of life writing with LGBTIQA+ youth. Read Roz’s writing at www.rozbellamy.com or on Twitter @bellarozz.