Opt-out is the right approach for sharing your medical records with researchers
If assumed consent is informed consent, it’s individuals who benefit
Register Debate Welcome to the latest Register Debate in which writers and experts go head to head on technology topics, and you – the reader – choose the winning argument. The format is simple: we propose a motion, the arguments for the motion will run this Monday and Wednesday, and the arguments against on Tuesday and Thursday.
During the week you can cast your vote on which side you support using the poll embedded below, choosing whether you're in favour or against the motion. The final score will be announced on Friday, revealing whether the for or against argument was most popular. It's up to our writers to convince you to vote for their side.
This week’s motion is: Assumed consent is the right approach for sharing healthcare patients’ data, beyond their direct care. Or to put it another way: patient records should be shared with medical researchers on an opt-out basis.
The debate around the benefits of sharing medical data for the greater good versus individual’s expectations of confidentiality and consent, has become heated to say the least over the past year and a half. But if consent is not just assumed but informed, do we all stand to benefit? Our contributors serve up their own prescriptions, but you get to decide.
Our first contributor arguing FOR THE MOTION is Dr Katherine Hanks, a GP based in Australia.
At first glance, the idea of sharing my private health information with researchers and governments is alarming.
What if I wanted to talk to my doctor about experiencing domestic violence, or a weird discharge, or how I’m feeling hopeless and depressed? What if that very private information could be transmitted elsewhere to be used by people I don’t know for purposes I haven’t been informed of? My initial response is no thanks.
As a GP I am well versed in navigating individual health privacy considerations; it’s common for a patient to want to know what their partner told me in their consult, or for an insurance company to seek access to a patient’s whole records regardless of what is actually relevant.
Even though it is illegal and unethical for me to disclose private medical information without permission, it’s common for patients to check that I won’t tell anyone else before they disclose something they feel is private, embarrassing or shameful. We need to continue to defend doctor-patient confidentiality, because without it, patient care and outcomes will certainly suffer due to fear of who might find out what is disclosed.
However, while individual health privacy needs to be robustly defended, this does not necessarily mean that health data can’t be aggregated and securely anonymised to further medical and social research. While it would be entirely inappropriate to inform a researcher that Brian, aged 50, living in London has prostate cancer without first seeking his permission, it is both appropriate and extremely beneficial for the progress of medical research to know that 50 year old men with prostate cancer who take medication A live for longer than those on medication B.
While individual health privacy needs to be robustly defended, this does not necessarily mean that health data can’t be aggregated and securely anonymised to further medical and social research
This example highlights some of the huge benefits of health data sharing. With this information, we can ensure all prostate cancer sufferers have the best medication and stop wasting healthcare money on less effective treatments. Knowing which groups in the community are being diagnosed enables better targeting of screening programs. This is all likely to reduce death, disability and healthcare costs.
And as for assumed consent for sharing data, it’s important to remember that assumed consent is still informed consent: patients are told that they are assumed to have consented to the sharing of their data for use in metadata analysis and, should they wish to opt out, how to do so. Assuming consent does not displace personal rights, it simply creates a presumption in favour of a public good.
The solution is not to curtail health data sharing – it is to ensure layers of protection so that data is securely anonymised and only accessible by legitimate entities. Research using aggregated health data should be publicly available and subject to audits and regulatory scrutiny. If done well, this can address the need to protect privacy while not missing out on the many benefits that sharing health data can bring. The two ideals, privacy and public welfare, can coexist. There is also significant scope for commercial innovation that can ultimately drive better outcomes for patients.
The experience of COVID-19 has shown that more collectivist, “tight” societies like Singapore and others in South-East Asia have fared better than more individualistic “loose” societies like the USA and the UK.
When it comes to the pandemic, societies whose people are willing to widely participate in public health measures like social distancing and wearing masks for the collective good have better outcomes. This is a lesson that translates to health data sharing. When it comes to public health, we need to lean towards favouring collective benefits because ultimately, individuals will reap the benefits. ®
Cast your vote below. We'll close the poll on Thursday night and publish the final result on Friday. You can track the debate's progress here.