Literature DB >> 16269554

Ethical considerations in presymptomatic testing for variant CJD.

R E Duncan1, M B Delatycki, S J Collins, A Boyd, C L Masters, J Savulescu.   

Abstract

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.

Entities:  

Keywords:  Health Care and Public Health

Mesh:

Substances:

Year:  2005        PMID: 16269554      PMCID: PMC1734042          DOI: 10.1136/jme.2005.011965

Source DB:  PubMed          Journal:  J Med Ethics        ISSN: 0306-6800            Impact factor:   2.903


  40 in total

1.  Outrageous fortune: the risk of suicide in genetic testing for Huntington disease.

Authors:  T D Bird
Journal:  Am J Hum Genet       Date:  1999-05       Impact factor: 11.025

2.  Eight prion strains have PrP(Sc) molecules with different conformations.

Authors:  J Safar; H Wille; V Itri; D Groth; H Serban; M Torchia; F E Cohen; S B Prusiner
Journal:  Nat Med       Date:  1998-10       Impact factor: 53.440

3.  On the origins of BSE.

Authors:  P Brown
Journal:  Lancet       Date:  1998-07-25       Impact factor: 79.321

4.  Predictive testing for Huntington's disease: I. Predictors of uptake in South Wales.

Authors:  J Binedell; J R Soldan; P S Harper
Journal:  Clin Genet       Date:  1998-12       Impact factor: 4.438

5.  The same prion strain causes vCJD and BSE.

Authors:  A F Hill; M Desbruslais; S Joiner; K C Sidle; I Gowland; J Collinge; L J Doey; P Lantos
Journal:  Nature       Date:  1997-10-02       Impact factor: 49.962

6.  A worldwide assessment of the frequency of suicide, suicide attempts, or psychiatric hospitalization after predictive testing for Huntington disease.

Authors:  E W Almqvist; M Bloch; R Brinkman; D Craufurd; M R Hayden
Journal:  Am J Hum Genet       Date:  1999-05       Impact factor: 11.025

7.  Danger of accidental person-to-person transmission of Creutzfeldt-Jakob disease by surgery.

Authors:  C Bernoulli; J Siegfried; G Baumgartner; F Regli; T Rabinowicz; D C Gajdusek; C J Gibbs
Journal:  Lancet       Date:  1977-02-26       Impact factor: 79.321

8.  Risk of transmission of bovine spongiform encephalopathy to humans in the United States: report of the Council on Scientific Affairs. American Medical Association.

Authors:  L Tan; M A Williams; M K Khan; H C Champion; N H Nielsen
Journal:  JAMA       Date:  1999 Jun 23-30       Impact factor: 56.272

Review 9.  Variant Creutzfeldt-Jakob disease.

Authors:  J Collinge
Journal:  Lancet       Date:  1999-07-24       Impact factor: 79.321

10.  Investigation of variant Creutzfeldt-Jakob disease and other human prion diseases with tonsil biopsy samples.

Authors:  A F Hill; R J Butterworth; S Joiner; G Jackson; M N Rossor; D J Thomas; A Frosh; N Tolley; J E Bell; M Spencer; A King; S Al-Sarraj; J W Ironside; P L Lantos; J Collinge
Journal:  Lancet       Date:  1999-01-16       Impact factor: 79.321

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  6 in total

1.  Blood Donation, Payment, and Non-Cash Incentives: Classical Questions Drawing Renewed Interest.

Authors:  Alena M Buyx
Journal:  Transfus Med Hemother       Date:  2009-09-21       Impact factor: 3.747

2.  Ethics in prion disease.

Authors:  Kendra Bechtel; Michael D Geschwind
Journal:  Prog Neurobiol       Date:  2013-07-29       Impact factor: 11.685

Review 3.  What is the role of genetic testing in movement disorders practice?

Authors:  Susanne A Schneider; Christine Klein
Journal:  Curr Neurol Neurosci Rep       Date:  2011-08       Impact factor: 5.081

Review 4.  A review of quality of life after predictive testing for and earlier identification of neurodegenerative diseases.

Authors:  Jane S Paulsen; Martha Nance; Ji-In Kim; Noelle E Carlozzi; Peter K Panegyres; Cheryl Erwin; Anita Goh; Elizabeth McCusker; Janet K Williams
Journal:  Prog Neurobiol       Date:  2013-09-11       Impact factor: 11.685

5.  Population screening for variant Creutzfeldt-Jakob disease using a novel blood test: diagnostic accuracy and feasibility study.

Authors:  Graham S Jackson; Jesse Burk-Rafel; Julie Ann Edgeworth; Anita Sicilia; Sabah Abdilahi; Justine Korteweg; Jonathan Mackey; Claire Thomas; Guosu Wang; Jonathan M Schott; Catherine Mummery; Patrick F Chinnery; Simon Mead; John Collinge
Journal:  JAMA Neurol       Date:  2014-04       Impact factor: 18.302

6.  Preclinical detection of infectivity and disease-specific PrP in blood throughout the incubation period of prion disease.

Authors:  Elizabeth B Sawyer; Julie Ann Edgeworth; Claire Thomas; John Collinge; Graham S Jackson
Journal:  Sci Rep       Date:  2015-12-03       Impact factor: 4.379

  6 in total

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