A case study into the ethics of privacy.
A big part of this information is collected from people, and is deemed personal. Because access to personal information may allow others to interfere with a person’s autonomous liberty, and because modern Western liberal societies are built on the principled respect for the autonomous liberal individual, this information deserves protection.
But a dilemma arises when access to personal information is crucial for human progress. In what follows, I evaluate the need for scientific research to access medical information of patients that have never consented to share this information for other purposes than their own medical treatment, in the context of the global race to develop a vaccine against the Covid-19 pandemic. The dilemma is a clash of two moral obligations: the moral obligation to contribute, or at least not obstruct, human progress versus the moral obligation to respect people’s autonomous liberty to decide which information they want to share with others.
I start by explaining how the information society is different from the societies that preceded it, and how human progress has come to essentially rely on unhindered, continuous data flows. Next, we have a look at the concept of privacy, and see that while its protection of individual autonomy is a highly and widely valued principle in modern Western societies, its object (what privacy is trying to protect) is rather elusive and inconclusive. After sketching this broad context, we zoom in on our dilemma at hand: how does our dilemma fit into this context, who is affected, what do we need to resolve the dilemma, and for which reasons? My evaluation concludes with a clear set of measures that aim to balance the opposite interests of the dilemma.