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Lookup NU author(s): Emeritus Professor Simon WoodsORCiD, Dr Pauline McCormack
This poster will discuss ethical issues around the development of biomarkers for neuromuscular disorders. The development of new sensitive and reliable bio-markers requires the utilisation of human tissue for research purposes and although such uses may be regarded as long established and routine, there have been a number of incidents which have brought such practices under scrutiny. The case of Moore against the University of California raised the question of whether the body and its parts could be regarded as property and thus supports the donor’s claim for a financial share in any benefit from the use of such tissues. In the UK, the scandal of Alder Hey exposed the culture within medicine of presuming a right to procure and utilise human tissues without consent and the more recent controversy over the Myriad Company’s claimed monopoly on the tests for BRCA1 and 2 has caused bitter resentment amongst patient groups, clinicians and other researchers. Despite this background, the imperative to develop sensitive and specific biomarkers to aid in diagnosis, prognosis, and drug development treatment remains. BIO-NMD is an EU funded research project focusing on Duchenne and Becker muscular dystrophies and collagen VI-related myopathies (which includes Ullrich congenital muscular dystrophy and Bethlem myopathy). There are several issues which ought to be addressed in this and any similar project and in this poster will give informed guidance for researchers and clinicians with reference to current ethical thinking on such topics as: 1. Procuring tissues 2. Respect for patient autonomy – consent and confidentiality 3. The duties of the researcher/ clinician 4. Governance and Stewardship 5. Findings, incidental findings and ‘feedback’ 6. Solidarity 7. Benefit sharing
Author(s): Woods S, McCormack P
Publication type: Conference Proceedings (inc. Abstract)
Publication status: Published
Conference Name: TREAT-NMD International
Year of Conference: 2011
Date deposited: 07/01/2013
Publisher: TREAT-NMD
URL: http://www.treat-nmd-conference.org/registration/poster-abstracts/social-ethical-issues/
