As we navigate the evolution of healthcare, what ethical dilemmas do we need to consider? How can emerging technologies help utilise health data while maintaining privacy?
The future of healthcare means more data. It means better technology and more information, which in turn can mean more accurate research and better healthcare solutions. But we must not forget about the ethics around retaining and using healthcare data.
We must consider the patient’s rights to privacy. We must ensure that the so-called solutions that are developed within a futuristic healthcare industry are truly as beneficial as they claim to be.
Speaking to Marielle Gross, a doctor in obstetrics and gynaecology as well as a bioethicist, I learned how central personal data is to the evolution of healthcare, and why that can be a double-edged sword. How do we use these emerging technologies to present potential solutions while protecting people’s data and privacy?
Gross splits her time evenly between working as a clinician and as a bioethics researcher. In fact, when I spoke to her, she had just come out of an operating room. “I do in-patient OB-GYN care, which ranges from anything that you would need in the hospital and in labour and delivery, gynaecological surgery, things like that.
“Then the other half of the time I’m doing research in education as a professor at the University of Pittsburgh. My research in bioethics and women’s health is specifically focused on what I call the ethics of evidence in women’s healthcare,” she said.
Gross said she ultimately chose to go into obstetrics and gynaecology because she believed it to be “the most bioethically rich” discipline in medicine.
“And then I got into the field and I realised that, despite the fact that our bread and butter every single day is deeply, ethically challenging material, controversial, justice-related … very few people in bioethics at a scholarly sort of level are dealing with both reproductive bioethics and practising reproductive medicine.
“It’s been super important to me as I’ve approached my training and my current practice to really focus on the bioethics that you could really only access by being in the room with patients.”
The separation of research and healthcare
Gross’s two roles, one as a bioethics researcher and one as a medical doctor, is the meeting of two worlds that she tells me have traditionally had barriers between them.
“We’ve intentionally separated clinical research from clinical practice. In fact, that’s mainly what bioethics as a field has grown up around because bioethics emerged specifically as a subdiscipline in philosophy as a response to really ethical atrocities committed in the name of science in the 20th century.”
She also spoke about the idea of therapeutic misconception, a term used to describe situations where participants believe they are going to receive therapy and do not recognise that they are enrolled in a clinical study.
“None of that really works when you’re treating every person essentially as a research subject by including, at the very least, their health data in studies as a matter of course in order to provide the best possible care,” she said.
‘You could provide the dexterity that’s befitting of 21st century technology and to apply that in the field of medicine’
– MARIELLE GROSS
“For me as a clinician, providing the best possible care means learning from every patient, but really, the ideal is that everything I learn, I share with my colleagues and everything they learn, they share with me and we all have that synergistic benefit. But that means, in a sense, treating all patients like research subjects, at least in some regard.”
Gross said that working on learning health systems is part of the reason she went to John Hopkins, as well as getting to work with Ruth Faden, the founder of the Johns Hopkins Berman Institute of Bioethics.
“So, when you think about the problem that women’s health faces, having systematically been excluded from research, and yet the fact that we have been … collecting all of this data and we have not been systematically aggregating and analysing it. If we simply systematically studied what we have been doing in the digital records that we’ve been taking in a very short order, we could dramatically improve that level of evidence,” she said.
“Learning health systems is basically putting that idea in practice,” she said. “You could provide the instantaneous feedback and the dexterity that’s befitting of 21st-century technology and computing to apply that in the field of medicine.”
However, while it sounds like a simple solution, it’s also considered radical because “it requires elimination of that intentional barrier that’s so central to bioethics because it really requires treating all of clinical care as a learning opportunity, which means that all clinical people are subject to it”.
The ethical barriers of 21st-century tech
The potential solutions that learning health systems offer immediately made Gross think of women’s health and the lack of data in that space. However, she quickly thought about the ethical limitations around it.
“We’re asking the most vulnerable members of the healthcare system, the patient, to give up something, which is the right to their privacy, their data, or to not be studied prior to them reaping the benefits of being in a learning health system,” she said.
“Because we’re requiring them to give something up before they get something in return and because of all the problems of distributive justice that go along with that, I viewed that as the rate-limiting step to ethically establishing a learning health system.”
This sent Gross down a rabbit hole of emerging technologies that could protect the patient’s privacy, specifically blockchain. “We could gain these benefits without making the sacrifices to privacy, or we can study people’s data without discovering it ourselves,” she said.
Gross said this had the potential to be game-changing but has found a disconnect between people in tech who are making the solutions and people in health research who are exploring the challenges in the medical industry. “It’s like, nary the twain shall meet.”
Additionally, Gross said GDPR is another fascinating aspect because the level of ethical health data regulations that are coming out of the EU compared to other settings, where some of the emerging technology is coming from, creates another divide.
“It’s like one place is thinking about the ethical and legal oversight that we would want and the other place is thinking about the actual systems that we’re building to do this work and there needs to be more collaboration of thought.”
The future of women’s health
With her focus on women’s health, I wanted to know if Gross believed the challenges around the ethical use of data disproportionately affect women. “Yes, I think they do.”
She added that one paper she has written recently, which is due to be published in the Journal of Feminist Bioethics, is an ethical critique of the monetisation of medical app data.
“It looks at two things,” she said. “One is how these technologies masquerade or assume the role of healthcare without any of the expertise or ethical commitments of healthcare providers and without the ethical moorings or obligations to patient welfare.
“And then at the same time, how this proprietary information that women have, for example about their own menstrual cycles, can be slated for monetary gain and within the context of women’s work being historically exploited and devalued.”
She added that femtech solutions in particular must be designed for those they intend to serve. An example she gave came from one of her collaborators, Bethany Corbin, who said there’s a menstrual app where users document their sexual activity with a little banana icon.
“[It’s] assuming the way that you’re looking at the significance of that activity, or why you’re looking at your menstrual cycle in the first place, as though it’s all related to either trying to get pregnant through heterosexual intercourse, or trying to avoid pregnancy.”
In bringing healthcare solutions into the future while navigating the ethical challenges, Gross said collaboration is vital. “Tech alone is not going to be able to do it. Medicine alone is not going to be able to do it. Law alone is not going to be able to do it. Social work alone would not be able to do it,” she said. “We absolutely need interdisciplinary work in order to move this forward.”
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