IEEE Digital Privacy Podcast Series: Episode 8
A Conversation with Dr. Agata Ferretti
Postdoctoral researcher, Health Ethics and Policy Lab
Department of Health Sciences and Technology, ETH Zurich
Listen to Episode 8 (MP3, 21 MB)
Part of the IEEE Digital Privacy Podcast Series
Episode Transcript:
Brian Walker: Welcome to the IEEE Digital Privacy podcast series, an IEEE Digital Studio production. This podcast series features conversations with industry and academic leaders as well as key stakeholders of digital privacy, in order to help advance solutions that support the privacy needs of individuals.
In this episode we speak with Agata Ferretti, a postdoctoral researcher at the Health Ethics and Policy Lab at the Department of Health Sciences and Technology, ETH Zurich. Agata's background is in philosophy, bioethics, and global health policy. Agata, thank you for taking time to speak with us today. To get started, can you share a little information on your background and your affiliations?
Dr. Agata Ferretti: Sure. So thank you very much to you and to the IEEE for having me. So I'm an ethics expert, and I work at the intersection of medicine, health policy, digital technologies, and in my PhD and in my current work I explore the ethical and governance implications of Big Data and the digital uses in biomedical research. And specifically I looked at whether existing ethical oversight mechanisms are suitable and fit for purpose to address emerging challenges in this field, and so, as you can imagine, digital privacy considerations are really relevant in this field. So I currently work as a postdoctoral researcher at the Health Ethics and Policy Lab of the Swiss Federal Institute of Technology in Zurich, and somehow all of the projects that we developed and deal with have relevance from the perspective of digital privacy. In fact, we explore topics such as the development and use of AI for medical purposes, the development of digital contact tracing, the opportunities that digital health presents for personalized health, and so all these different topics have connections and relevance for privacy.
Brian Walker: Why do you think privacy should be a priority for individuals?
Dr. Agata Ferretti: So what I can say is that privacy in my opinion should be prioritized for individuals because it's a fundamental individual right and it's essential for protecting personal autonomy and dignity. And in this age of Big Data, large amounts of information are constantly being collected, analyzed and shared, and this has really I think positive outcomes, and it's a great opportunity for healthcare in terms of diagnostics, preventions and treatment but also from the perspective of improving healthcare services, healthcare management and so on, yet in my opinion we cannot consider all the positive aspects without also looking at the potential challenges and downsides that this technological change is bringing. And so I think that if we think about the healthcare sector, where years ago to collect information we had to go to the hospitals, whereas now we can use digital tools such as apps, tracking devices, Internet of Things, wearables of course, this of course brings a lot of benefits and improves the quality of healthcare but I think also might bring risks for individual privacy, as individual privacy might be in danger as more data are collected, stored and shared digitally.
Brian Walker: So, Agata, what types of privacy issues are of most concern in the healthcare sector today?
Dr. Agata Ferretti: Yeah, so I would say, first of all, that privacy concerns in the healthcare sector are multi-faceted, and therefore they cannot find I would say one simple, unique solution. So if you think, for instance, about the medical records, which from paper version have been transferred to the digital form, right, the increasing amount of data that are collected, stored and shared digitally translates in bigger datasets, right, and these bigger datasets often are vulnerable to breaches and hacking, and so these breaches have become more and more common, as the healthcare sector is a primary target for vulnerable information and very sensitive information. Additionally, I also think that sometimes irrelevant data are collected, as researchers but also tech companies tend to collect as many data as possible, although all this information not necessarily are relevant for the purpose they are going to be then used for, and I would say even when data are collected for a specific purpose, they can be then shared and reused with third parties without user consent, and this is especially true when data are declared "anonymized." But the thing is that of course while technology advance quickly, data governance, regulation and oversight may not keep pace with these advancements, and therefore certain areas of research and data uses are left inadequately addressed by security and governance measures. And so I think for me what's relevant is that technical solutions alone might not be sufficient to address all these different privacy concerns, and so in my opinion privacy by design is a very good first step, but a more comprehensive approach might be needed, a sort of approach that is more a critical thinking and assessment type of approach that is applied at various stages of the data's life cycles and use. And so I think somehow these types of privacy-preserving approaches must be integrated in the process, and they can't be really reduced to a sort of checklist.
Brian Walker: Can you speak more to the ethical concerns related to digital privacy?
Dr. Agata Ferretti: Yeah, so I think there are various ethical concerns, though I would like to highlight that for sure unauthorized access to health information can lead to serious harms for individuals, including of course psychological and emotional harm, and disclosure of sensitive information related, for example, in the healthcare sector to sensitive information such as sexual or mental health, which are actually highly stigmatized in most countries around the world, can result in reputational, economic, social and even physical damage and harm in some countries. Additionally, I would say that another very relevant ethical issue is that lack of transparency about how data is used and by whom this data can be used can also be very problematic. In fact, patients or users of digital technologies have the right to know how their information is being used and shared and most importantly I would say also, who is benefiting from this data sharing and use and access. So I think that failing to adequately inform people and engage them-- so it's not enough I guess to make them aware but really engage them in the conversation about how their data are used and for which purposes and whether they agree or not-- can erode their trust in of course the health service provider, in the health organizations, in health institutions but more broadly also, for example, in health research more generally, and that of course would be a very bad or a negative consequence. And so another interesting ethical point is that anonymization is I think an interesting concept, as what is currently anonymous may not be anonymous in the future, and so in the context of Big Data particularly, I think even if individual data are anonymized, the aggregated power of data can potentially harm not only single individuals but also and most importantly I think vulnerable and marginalized groups, which sometimes we forget to talk about when we talk about privacy. We only focus about the individuals, but I think really privacy's not only relevant as a concept for the individual subjects but really can have similar implications for groups.
Brian Walker: How are these concerns or issues related to digital privacy being addressed differently regionally versus globally?
Dr. Agata Ferretti: Yeah, so I think this issue of regional and global differences is a complex one. I conducted some research in the past year, and this shows that there is no kind of universal policy that is applicable across all countries when it comes to data governance but even digital health or AI regulation, right? So this can be specifically problematic in the context of Big Data and biomedical research, where projects and technology development I would say involve a variety of institutions, companies, research partners within and across different countries. And so, for example, in Europe we have GDPR, the General Data Protection Regulation, that applies across European countries, but of course there are projects that are carried out between and across non-European countries, and so most countries worldwide are developing and implementing their own privacy regulation policies, yet there are challenges when collaborating across borders, and so what we can say is that at the moment, there is no set of standards for data governance, but this would be highly needed to protect individuals across countries. And in addition, let's say, to the regulatory framework, I think digital literacy is also an important aspect with ethical implications of privacy. In fact, I would say that digital divide exists both within and across countries, and some population groups may lack the knowledge and the resources to protect their personal information, and so these of course can exacerbate privacy risks and potentially lead to further marginalization. And so I think to address privacy concerns, we also need to tackle both the regulatory space at international level but also digital literacy among different populations both regionally and globally.
Brian Walker: So, Agata, how do you see the IEEE Digital Privacy Initiative helping to advance the technology space?
Dr. Agata Ferretti: So I think that the IEEE Digital Privacy Initiative has a crucial role to play in raising awareness and increasing the understanding of privacy issues among tech experts, engineers and in general all people developing and using technologies nowadays in the field of health and beyond. And I see how raising awareness is important in an educational institution like the one I work at, ETH Zurich, where we teach students from technical departments such as computer science, robotics, engineering, ethics, engineering the ethics of technology, and the students are really highly motivated to learn more about privacy and develop skills related to this topic, so I think as students recognize the urgency of learning more about digital privacy, so are experts and engineers and researchers all around the world. And so IEEE initiative I think can act as a sort of catalyst for generating interest among these professionals and to somehow provide a more streamlined perspective across country on how to tackle digital privacy concerns let's say as well, and so it can guide experts in reflecting on privacy issues and considering the potential implications of the day-by-day decision in research or development of technologies, so I think really promoting privacy awareness and providing guidance for best practice, this initiative can help advance the digital privacy space.
Brian Walker: Thank you for listening to our interview with Agata Ferretti. To learn more about the IEEE Digital Privacy Initiative, please visit our Web portal at digitalprivacy.ieee.org.