Thinking about ethical and regulatory issues concerning health data requires remarkable patience. This we learned early in our research initiative that aims to promote uses of health data in a citizen-centric manner in Finland and elsewhere. Hundreds of domain-specific laws govern the uses of personal data. At the same time as there is a call for more efficient utilization of health data in biobanks, many other laws restrict use of health data for scientific research.
Ironically, the closer one gets to professional and medical uses of health data, the less room there appears to be for individual citizens interested in learning about their own health data, or in following how their data are utilized for research purposes.
It is painfully apparent there is no quick remedy for the current situation: expert opinions on ethical uses of health data are often more frustrating than illuminating. Typically, they suggest more guidelines and more research. What exactly do responsible transactions of health data across different levels and domains look like? How can we bring together law, regulation, frameworks for responsible research and development and actual daily practices around health data? The possible tensions and conflicts between various domains and aims of using health data should also be addressed in a more efficient and consistent manner.
To avoid getting totally stuck, we aimed our efforts toward re-energizing discussions around ethics of health data. Typically, workshops on health data ethics focus on individual consent. Even if the focus would be on dynamic consent, such workshops are just not very dynamic. Their scope is narrow: scholars explore stamp-sized issues in a domain encompassing a range of data uses and practices undertaken in and across a variety of national and international domains by public and private organizations as well as cyber crooks.
Our conclusion: health data ethics needs to cover issues around commercialization of health data, technological platforms and data practices. Ethics should not be outsourced to regulators and ethicists only.
We need a framework of moral accounting to clarify the ethics around health data. The moral accounting should cover technology designs that allow delivery of data and specify what is owed to people whose health data are being used. This concerns all actors who use other people’s health data to their own advantage. We think the healthbank initiative is a step toward such moral accounting. It can help us clarify the duties, rights and obligations arising from health data transfers and make more transparent the value of health data for individuals and the society at large.
Digital Health Revolution research consortium / Consumer Society Research Centre, University of Helsinki