When is it worth it? Protection and infringements of privacy 1
That most of us value the ability to control who can gain access to our sensitive information is fairly uncontroversial. How highly we value this ability, when other values are at stake, is a more difficult question.
The purpose of this project is, first, to find out what the other values that are difficult to reconcile with informational privacy, are. The main focus is sensitive information in digital form, stored in medical records and different types of health registers. Secondly, the question concerning how people value informational privacy when this collides with other values will be examined empirically. This investigation is carried out through focus group interviews with relevant populations, and, together with other researchers, through a questionnaire survey.
During the first two years of my flexit project, my work focused on the collection of data, and to some extent the analysis of it. I also produced two reports for The Swedish Agency for Health and Care Services Analysis where I was working (see list of publications). I was invited to present this work on for different audiences – including for government and parliament representatives, researchers, patient organizations – on more than 20 occasions. During these two years I also participated in a radio programme (Filosofiska rummet, Sveriges Radio P1) based on my work on privacy.
I have participated in two academic conferences (Amsterdam Privacy Conference, University of Amsterdam, 2015 and 2018) and one workshop (Exploitation in Bioethics, Köpenhamns universitet, 2018) as part of the project. I have written and submitted four articles. In two of the articles I analyse and present an understanding of the debate concerning the use of health data in Sweden and reasons for disagreement. In the two other articles, I report the findings from the interview study. One concerns views on what privacy is and why it is valuable, where findings are compared to the philosophical literature on privacy. The other concerns views on when privacy is invaded in the context of health data usage. In addition to these four articles, I am writing up two articles together with my colleagues at Karolinska Institute. These are based on a survey study I carried out while at Vårdanalys. One of them present our findings concerning how the general public wish their health data to be used, while the other focus on such attitudes related to trust.