Introduction

The background to our discussion is the ability to determine the risk of onset of disease and premature death by presymptomatic and predictive genetic testing (chapter 2). The worries and hopes to which this has given rise are reflected in the ethical debate about genetics and insurance. The ethical question most commonly discussed in this particular context is the question of insurance companies' access to and use of genetic information.

This key issue can be subdivided into two questions. (i) Should insurance companies be allowed to demand that a previously untested person applying for insurance be tested? (ii) Should insurance companies have the right to information from tests that have already been conducted? If the answer to the first question is yes, it will obviously be yes for the latter too. There is no point in insurance companies asking for a new test if they are not granted access to the information from it when the test is made. The reverse, however – the proposition that insurance companies should be allowed to ask for the results from past tests, but not to demand new ones – is a position that can be taken and has indeed been defended.

There are two reasons for emphasising the distinction between these two kinds of regulation. First, this has been the primary distinction made in previous discussion of the regulation of insurance companies' access to genetic information.