Ethical issues in haemophilia

Ethical issues surrounding both the lack of global access to care as well as the implementation of advancing technologies, continue to challenge the international haemophilia community. Haemophilia is not given the priority it deserves in most developing countries. Given the heavy burdens of sicknes...

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Bibliographic Details
Published in:	Haemophilia : the official journal of the World Federation of Hemophilia Vol. 12; no. s3; pp. 30 - 35
Main Authors:	DIMICHELE, D., CHUANSUMRIT, A., LONDON, A. J., THOMPSON, A. R., COOPER, C. G., KILLIAN, R. M., ROSS, L. F., LILLICRAP, D., KIMMELMAN, J.
Format:	Journal Article
Language:	English
Published:	Oxford, UK Blackwell Publishing Ltd 01-07-2006
Subjects:	Adult Bioethical Issues Child ethics Ethics, Research gene transfer technology gene-based diagnosis Genetic Testing - ethics Genetic Therapy - ethics global access to care haemophilia Health Services Accessibility - ethics Hemophilia A - diagnosis Hemophilia A - therapy Humans Male
Online Access:	Get full text
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Summary:	Ethical issues surrounding both the lack of global access to care as well as the implementation of advancing technologies, continue to challenge the international haemophilia community. Haemophilia is not given the priority it deserves in most developing countries. Given the heavy burdens of sickness and disease and severe resource constraints, it may not be possible to provide effective treatment to all who suffer from the various ‘orphan’ diseases. Nevertheless, through joint efforts, some package of effective interventions can be deployed for a significant number of those who are afflicted with ‘orphan’ diseases. With cost‐effective utilization of limited resources, a national standard of care is possible and affordable. Gene‐based diagnosis carries attendant ethical concerns whether for clinical testing or for research purposes, even as the list of its potential benefits to the haemophilia community grows rapidly. As large‐scale genetic sequencing becomes quicker and cheaper, moving from the research to the clinic, we will face decisions about the implementation of prenatal, neonatal and other screening programs. Such debates will require input from not just the health care professionals but from all stakeholders in the haemophilia community. Finally, long‐term therapeutic success gene transfer in small and large animal models raises the question of when and in which patient population the novel therapeutic approach should first be studied in humans with haemophilia. Although gene therapy represents a worthy goal, the central question for the haemophilia community should be whether it wishes to volunteer itself as a model for a much broader set of innovations.
Bibliography:	ark:/67375/WNG-ZDTSB22M-D ArticleID:HAE1258 istex:DEB8B7F3FE842B084F520A5F108D0F94DFD14FEB ObjectType-Article-2 SourceType-Scholarly Journals-1 ObjectType-Feature-3 content type line 23 ObjectType-Review-1
ISSN:	1351-8216 1365-2516
DOI:	10.1111/j.1365-2516.2006.01258.x