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There is a lot of interest in the interdisciplinary topic ‘Digital citizenship’ in our society that is moving towards digitalisation. Therefore, the Law Centre for Health and Life welcomed Mahsa Shabani to their team as an Associate Professor who has a special focus on this subject. ‘It is not enough to look at the law, we really need broader ethical frameworks for protecting citizens' privacy rights in different settings.'

As Shabani has a background in health privacy law and in bioethics, she will focus on how the rights of citizens are being impacted by digitalisation and innovation in the healthcare setting. Today, medical information is stored in electronic databases in hospitals. But we also generate health related data ourselves. ‘Suppose you use a smart watch. It can monitor your lifestyle or your health 24/7. For example, how many steps do you take during the day, or what is your heart rate? We consider this all as health related information. The question is: who can have access to our health data and for which purposes? And how can we mitigate risks of data misuse by third parties?'

Your insurance company or your employer may be interested to see if you live a healthy life. But commercial companies are also interested in your data. ‘Pharmaceutical companies, for example, are very interested in our health and medical information, because they can use it to develop new medicines or new diagnostic tools.’ That can be a good thing. But some people worry about the unauthorised access to their personal medical data, and others about commercial companies profiting from their data. ‘When pharmaceutical companies develop new medicines and make them very expensive, they make a profit. But do they return this benefit to society?’

Health data are very sensitive and we need to protect them. That's the reason why we, from a legal, ethical and social perspective, try to find out how we can protect different rights of individuals

Many big tech companies like Google and Amazon are also interested in data access. They are developing artificial intelligence and new tools. ‘Health data are very sensitive and we need to protect them. That is why we, from a legal, ethical and social perspective, are trying to find out how to protect different rights of individuals and analyse whether the existing regulations and ethical safeguards are adequate or not. But at the same time, we should not hinder medical research or new developments in medicine and health.’

Robots in elderly care

Mahsa Shabani's background is in law and bioethics, and she’s very interested in ethical issues. ‘From the viewpoint of bioethics, it's interesting for me to see all these new innovations that are taking place in healthcare. For example, the discussion about new advancements in AI, genetics, and preventive medicine, and discussions about how they can mitigate or exacerbate the existing health disparities.’

After Shabani graduated from law school, she visited a university in the USA. During her visit she followed a course in bioethics out of curiousity. 'I found it very interesting. We discussed different innovations in medicine and in health, and how we need a robust ethical and legal framework to regulate them. I enjoyed the interdisciplinary nature of this course and decided to continue my research in this field. Before starting my PhD, I also followed an extra master in Bioethics to learn more about various topics in the intersection of ethics and health law.'

Shabani calls it a dynamic topic. 'Every day we witness new innovations in healthcare. These days, for example, there are discussions about the shortage of medical care and personnel, for instance in elderly-care, and how that can be addressed by use of new technologies such as robots or smart devices. But they can raise many questions such as: what would the impact on privacy of the citizens? Do we have enough safeguard to protect their rights? What is the view of the citizens on using these tools and potential automation of the services?'

Bringing ethics into the discussion

Mahsa Shabani is looking forward to being part of an interdisciplinary network at the University of Amsterdam and collaborating with colleagues not only from the Amsterdam Law School, but also from other faculties. ‘We will jointly develop new courses.’ Previously, she taught various courses in the intersection of ethics and law, including a course on data ethics. This course focused not only on health data, but on different types of data that citizens generate or are impacted by: ‘We looked at different settings, such as law enforcement, elections, "Internet of Things", in which new data-driven technologies and their databases have been used. How do they impact different principles such as transparency, justice and fairness? We also discussed the responsibilities and the duties of various professionals and analysed the relevant best practices or code of conducts. So basically, we brought ethics into the discussion. It is not enough to look at the law, we really need broader ethical frameworks when dealing with citizens and when handling their data in different settings.’