21 - Privacy

Summary

Genetic databases are often seen as a threat to individual privacy. This is apparent in surveys that show concerns of the general public when it comes to the use of personal information in genetic research. The most obvious reason why people worry about their privacy in this context is fear of misuse of information, stigmatization of groups and unjustified intrusion into people's personal affairs.

In this chapter I will examine the justifications for privacy claims with regard to population-based genetic databases like the Icelandic Health Sector Database (HSD). My aim is to show that the popular definition of individual privacy as control over personal information is not likely to be a useful tool for protecting the interests associated with informational privacy. This is so because of the nature of personal information, because of difficulties with distinguishing adequately between sensitive and non-sensitive information, and because of the nature of computerized databases. I will argue that if we want to take privacy interests seriously in this context we need to look in new directions for securing them.

Informational privacy

In the literature on privacy we find little consensus on the meaning or scope of the concept. Ever since it was first argued that we have a right to privacy, many diverse definitions have been defended and criticized. More recently, scholars have argued that privacy should be understood as a cluster concept that covers several privacy interests.