Support communities involved in disease studies
Does the biomedical community have a moral responsibility to ensure sustained support for people who were crucial to its research? I argue that it does. As a scientist dedicated to treating Huntington's disease, I struggle with the knowledge that the current quality of life of those affected is...
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| Published in | Nature (London) Vol. 531; no. 7593; p. 141 |
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| Main Author | |
| Format | Journal Article |
| Language | English |
| Published |
London
Nature Publishing Group UK
10.03.2016
Nature Publishing Group |
| Subjects | |
| Online Access | Get full text |
| ISSN | 0028-0836 1476-4687 1476-4687 |
| DOI | 10.1038/531141a |
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| Abstract | Does the biomedical community have a moral responsibility to ensure sustained support for people who were crucial to its research? I argue that it does. As a scientist dedicated to treating Huntington's disease, I struggle with the knowledge that the current quality of life of those affected is deplorable. I have seen people shunned and neglected by their relatives, sitting alone in darkened rooms, devoid of medical or social support. I have met the children of those affected, who are afraid of what will become of them. Tragically, suicide is common. |
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| AbstractList | Does the biomedical community have a moral responsibility to ensure sustained support for people who were crucial to its research? I argue that it does. As a scientist dedicated to treating Huntington's disease, I struggle with the knowledge that the current quality of life of those affected is deplorable. I have seen people shunned and neglected by their relatives, sitting alone in darkened rooms, devoid of medical or social support. I have met the children of those affected, who are afraid of what will become of them. Tragically, suicide is common. Lack of continued help for poor families involved in Huntington’s-disease research has sown resentment and mistrust, says Ignacio Muñoz-Sanjuan. |
| Author | Muñoz-Sanjuan, Ignacio |
| Author_xml | – sequence: 1 givenname: Ignacio surname: Muñoz-Sanjuan fullname: Muñoz-Sanjuan, Ignacio email: ignacio.munoz@chdifoundation.org organization: Ignacio Muñoz-Sanjuan is vice-president of biology at the CHDI Foundation and the founder of Factor H, a project to help Latin American communities affected by Huntington’s disease |
| BackLink | https://www.ncbi.nlm.nih.gov/pubmed/26961621$$D View this record in MEDLINE/PubMed |
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| Copyright | Springer Nature Limited 2016 Copyright Nature Publishing Group Mar 10, 2016 |
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| DOI | 10.1038/531141a |
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| Snippet | Lack of continued help for poor families involved in Huntington’s-disease research has sown resentment and mistrust, says Ignacio Muñoz-Sanjuan. Does the biomedical community have a moral responsibility to ensure sustained support for people who were crucial to its research? I argue that it does. As a... |
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| Title | Support communities involved in disease studies |
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