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Haemophilia. 2008 Jul;14 Suppl 3:122-9. doi: 10.1111/j.1365-2516.2008.01738.x.

Ethical considerations in clinical investigation: exploring relevance in haemophilia research.

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  • 1Department of Pediatrics, Weill Cornell Medical College, New York, NY 10065, USA.


Painful controversy has so far been largely absent from the history of haemophilia-related clinical research. However, the investigative methods now needed to realize evidence-based clinical practice, therapeutic advance, and a progressive standard of care for patients worldwide will be accompanied by the potential for ethical dilemma and transgression. From the current vantage point, three primary ethical issues merit special consideration: (i) the therapeutic misconception inherent to all clinical research and the randomized trial in particular; (ii) high risk and potentially non-beneficial novel technology research in children; and (iii) a collaborative partnership approach to research in the developing world. This study will focus on a discussion of each of these, drawing from the research ethics literature to offer a potential template for future deliberations in clinical trial design.

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