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Progress in haemophilic care: ethical issues.

Berntorp, Erik LU (2002) In Haemophilia 8(3). p.435-438
Abstract
Care of haemophilic patients has dramatically improved during the past 40-50 years. Clotting factor concentrates have become much safer. Expensive treatments such as prophylaxis, immune-tolerance induction, the use of bypassing agents in inhibitor patients, and the replacement of joints have become available. However, there is still a shortage of factor concentrate, and we are yet to discover the most cost-effective treatment for patients. There is also a wide gap in the availability of these treatments between developing and developed countries, and a risk that patients are treated in unnecessarily expensive ways in some parts of the world compared with those who suffer from a lack of treatment in other parts, thus creating the ethical... (More)
Care of haemophilic patients has dramatically improved during the past 40-50 years. Clotting factor concentrates have become much safer. Expensive treatments such as prophylaxis, immune-tolerance induction, the use of bypassing agents in inhibitor patients, and the replacement of joints have become available. However, there is still a shortage of factor concentrate, and we are yet to discover the most cost-effective treatment for patients. There is also a wide gap in the availability of these treatments between developing and developed countries, and a risk that patients are treated in unnecessarily expensive ways in some parts of the world compared with those who suffer from a lack of treatment in other parts, thus creating the ethical dilemma of whether less safe but more affordable concentrates should be used in developing countries. Other issues that raise ethical problems are the use of molecular genetics and gene therapy. It is proposed that international working groups, preferably under the auspices of the World Health Organisation and the World Federation of Hemophilia, take responsibility to solve the ethical issues in haemophilic care, the basis of which should be to promote the education of modern care and to set up clinical studies, including studies on health economics, so that treatment and care are cost-effective and based on sound evidence. (Less)
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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
Haemophilia
volume
8
issue
3
pages
435 - 438
publisher
Federation of European Neuroscience Societies and Blackwell Publishing Ltd
external identifiers
  • wos:000175668900044
  • pmid:12010446
  • scopus:0036588662
ISSN
1351-8216
DOI
10.1046/j.1365-2516.2002.00615.x
language
English
LU publication?
yes
id
25077d06-6b5d-48ea-b4cc-8443b8d1880a (old id 108225)
alternative location
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12010446&dopt=Abstract
date added to LUP
2007-07-12 12:22:43
date last changed
2017-01-01 04:57:21
@article{25077d06-6b5d-48ea-b4cc-8443b8d1880a,
  abstract     = {Care of haemophilic patients has dramatically improved during the past 40-50 years. Clotting factor concentrates have become much safer. Expensive treatments such as prophylaxis, immune-tolerance induction, the use of bypassing agents in inhibitor patients, and the replacement of joints have become available. However, there is still a shortage of factor concentrate, and we are yet to discover the most cost-effective treatment for patients. There is also a wide gap in the availability of these treatments between developing and developed countries, and a risk that patients are treated in unnecessarily expensive ways in some parts of the world compared with those who suffer from a lack of treatment in other parts, thus creating the ethical dilemma of whether less safe but more affordable concentrates should be used in developing countries. Other issues that raise ethical problems are the use of molecular genetics and gene therapy. It is proposed that international working groups, preferably under the auspices of the World Health Organisation and the World Federation of Hemophilia, take responsibility to solve the ethical issues in haemophilic care, the basis of which should be to promote the education of modern care and to set up clinical studies, including studies on health economics, so that treatment and care are cost-effective and based on sound evidence.},
  author       = {Berntorp, Erik},
  issn         = {1351-8216},
  language     = {eng},
  number       = {3},
  pages        = {435--438},
  publisher    = {Federation of European Neuroscience Societies and Blackwell Publishing Ltd},
  series       = {Haemophilia},
  title        = {Progress in haemophilic care: ethical issues.},
  url          = {http://dx.doi.org/10.1046/j.1365-2516.2002.00615.x},
  volume       = {8},
  year         = {2002},
}