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Comparisons with testing for HIV
- Ethical considerations in presymptomatic testing for variant CJD


Should a cost effective presymptomatic test for vCJD become available, our ethically preferred protocol is similar to the current approach for HIV testing. Anyone who desires to undergo a test for HIV can do so. However, if individuals donate blood (posing a risk to others), their blood is screened for HIV and, if a positive result is returned, they are informed of their HIV status. Also included in the current HIV protocol is compulsory before and after test counselling. We strongly recommend that the same level of counselling be made compulsory for presymptomatic vCJD testing.

The major difference between HIV testing and testing for vCJD is that, if individuals do not want to know their HIV status, they can simply choose not to donate blood. However, some surgery, including neurosurgery, for which individuals will need to undergo screening for vCJD, may be essential for survival. Thus, it is not realistic to assume that, if individuals do not want to be tested for vCJD, they can safely choose not to undergo surgery. One alternative may be to offer people the option of non-disclosure of test results. This would allow them to remain unaware of their vCJD status, while still benefiting the health of the public. Furthermore, it is important to remember that hospitals are able relatively easily to guard against HIV transmission via the application of universal precautionary measures for all individuals undergoing medical procedures. This is not currently the situation with regard to vCJD. The disease agent causing vCJD is not easily destroyed by routine sterilisation methods and requires a higher level of disinfection practice and precautions to limit the risk of secondary transmission.9,46

Summary of main points


  1. Variant Creutzfeldt-Jakob disease (vCJD) arose from the zoonotic spread of bovine spongiform encephalopathy (BSE).
  2. Prophylaxis for vCJD does not exist and carriers may be asymptomatic.
  3. Human to human transmission of vCJD has most likely occurred through blood transfusions and vCJD remains difficult to sterilise against using conventional methods.
  4. Imperatives exist for the development of a presymptomatic diagnostic test for vCJD and the ethical implications of test provision require consideration.
  5. When a presymptomatic test for vCJD becomes available, we propose compulsory testing of all blood/organ donors and individuals undergoing surgery and invasive procedures that have a significant risk of disease transmission, and the provision of testing to any individuals voluntarily requesting it.

Omitted from our discussion and deliberations regarding the ethical issues of presymptomatic testing for vCJD has been health economic considerations. If we are to view public health in a comprehensive (and realistic) manner, the costs associated with each testing protocol must also be considered. From a health economics perspective, the optimum protocol, using society as a whole as the point of reference, will be the protocol that minimises transmission, while remaining cost effective. Some of the health economic concerns associated with presymptomatic testing for vCJD may be the cost of counselling, the cost of looking after people who are infected with vCJD, the cost of disposing of surgical instruments, the cost of performing the test (depending on whether the Government or the individual pays), and the number of catastrophic events.

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