Ethical considerations in presymptomatic testing for variant CJD
R E Duncan1, M B Delatycki2, S J Collins3, A Boyd3, C L Masters3 and J Savulescu4
1 Murdoch Children’s Research Institute and the Bruce Lefroy Centre for Genetic Health Research, Royal Children’s Hospital, Parkville, Australia; Department of Paediatrics and Centre for the Study of Health and Society, Department of Public Health, University of Melbourne, Australia
2 Murdoch Children’s Research Institute, the Bruce Lefroy Centre for Genetic Health Research and Genetic Health Services Victoria, Royal Children’s Hospital, Parkville, Australia; Department of Paediatrics, University of Melbourne, Australia
3 Australian National Creutzfeldt-Jakob Disease Registry, Department of Pathology, University of Melbourne, Parkville, Australia
4 Murdoch Children’s Research Institute, Royal Children’s Hospital, Parkville, Australia; Oxford Uehiro Centre for Practical Ethics, University of Oxford, UK
Professor Julian Savulescu
Director, Oxford Uehiro Centre for Practical Ethics, Littlegate House, St Ebbe’s Street, Oxford OX1 1PT, UK; [email protected]
Original version received 16 February 2005
Accepted for publication 16 February 2005
Variant Creutzfeldt–Jakob disease (vCJD) is a fatal, transmissible, neurodegenerative disorder for which there is currently no effective treatment. vCJD arose from the zoonotic spread of bovine spongiform encephalopathy. There is now compelling evidence for human to human transmission through blood transfusions from presymptomatic carriers and experts are warning that the real epidemic may be yet to come. Imperatives exist for the development of reliable, non-invasive presymptomatic diagnostic tests. Research into such tests is well advanced. In this article the ethical implications of the availability of these tests are elaborated and comparisons drawn with predictive genetic testing for Huntington’s disease and screening for HIV. Paramount to considerations is the issue of whom to test, weighing up respect for personal autonomy against obligations to benefit and protect society. A paradigm is proposed similar to that used for HIV screening but with unique features: compulsory testing of all blood/organ donors and individuals undergoing surgery or invasive procedures who have a significant risk of disease transmission.
Abbreviations: BSE, bovine spongiform encephalopathy; HD, Huntington’s disease; PrPres, protease resistant conformers; TSEs, transmissible spongiform encephalopathies; vCJD, variant Creutzfeldt–Jakob disease
Keywords: bovine spongiform encephalopathy; medical ethics; personal autonomy; variant Creutzfeldt–Jakob disease
Source: Journal of Medical Ethics 2005;31:625-630.