When exploring possible protocols, two key decisions are paramount. The first decision is about consent: should the test be voluntary or compulsory? The second decision is about whom to test: should all people be tested or only selected populations (for example, individuals undergoing medical procedures with an increased risk for transmission—defined from this point as a risk procedure). Based on these two decisions, there are at least four possible protocols: (1) all persons wanting to be tested can be tested; (2) all persons undergoing a risk procedure who want to be tested can be tested; (3) all persons must be tested; and (4) all persons undergoing a risk procedure must be tested. Table 1 summarises these four protocols.18
The principal competing issues when deciding upon a protocol for the provision of presymptomatic testing for vCJD are respect for personal autonomy and the promotion of public health. If we consider the four protocols in terms of personal autonomy, it is clear that the protocol maximising personal autonomy is the one allowing every person who wants to undergo presymptomatic testing for vCJD to do so (protocol 1). Table 2 presents an analysis of the four protocols with respect to personal autonomy.
If we consider the four protocols in terms of the promotion of public health, it is clear that the protocol maximising public health and safety is the one enforcing compulsory testing of all individuals undergoing risk procedures (protocol 4). Table 3 presents an analysis of the four protocols with respect to the promotion of public health.
We argue that the ethically most appropriate protocol is the one that offers the best compromise between individual autonomy and the greatest benefit to society. That is, a protocol where all blood/organ donors and individuals undergoing surgery and invasive procedures with a significant theoretical risk of disease transmission undergo compulsory testing but where any other individual desiring a test also has access to one. This is a combination of protocols 1 and 4 above.
Given the possibilities for discrimination in the insurance and employment sectors, we recommend this testing protocol be subject to legislation that bans the use of presymptomatic test results by insurance companies or employers. This is in line with recommendations made by the Human Genetics Commission of the UK. In their report titled Inside information, they recommend that "the government consider in detail the possible need for separate UK legislation to prevent genetic discrimination and that this evaluation form part of a long-term policy review on the use of personal genetic information in insurance and employment."46 We make similar recommendations here.