Article ; Online: The ethics of crowdfunding in paediatric neurology.
Developmental medicine and child neurology
2022 Volume 65, Issue 4, Page(s) 450–455
Abstract: In the last decade, there has been a dramatic increase in the number of families resorting to internet-based public appeals to fund access to novel, highly expensive, or experimental therapies for rare disorders. Medical crowdfunding may provide a means ... ...
| Abstract | In the last decade, there has been a dramatic increase in the number of families resorting to internet-based public appeals to fund access to novel, highly expensive, or experimental therapies for rare disorders. Medical crowdfunding may provide a means to fund treatments or interventions, but it raises individual and societal ethical questions. In this review, we consider the ethical challenges crowdfunding poses in paediatric neurology, drawing on the example of gene therapy for spinal muscular atrophy. We discuss physician responsibilities, and how neurologists should respond to crowdfunding that they encounter in clinical practice. We also briefly consider actions that can be taken by clinicians, charities, and crowdfunding websites to reduce harms. The best way to mitigate these harms may be to target the high costs and restrictive criteria that limit access to many novel treatments, and to optimize treatment utility, for instance by newborn screening. WHAT THIS PAPER ADDS: Crowdfunding is a social phenomenon arising from families' inability to access desired treatment. Treatments sought by crowdfunding range from those that are clearly beneficial (but unaffordable) to those that would be ineffective and potentially harmful. Crowdfunding carries a range of harms and risks to families and children and has wider social impact. |
|---|---|
| MeSH term(s) | Child ; Infant, Newborn ; Humans ; Fund Raising ; Crowdsourcing ; Healthcare Financing ; Genetic Therapy ; Neurology |
| Language | English |
| Publishing date | 2022-10-21 |
| Publishing country | England |
| Document type | Journal Article ; Review ; Research Support, Non-U.S. Gov't |
| ZDB-ID | 80369-8 |
| ISSN | 1469-8749 ; 0012-1622 |
| ISSN (online) | 1469-8749 |
| ISSN | 0012-1622 |
| DOI | 10.1111/dmcn.15442 |
| Database | MEDical Literature Analysis and Retrieval System OnLINE |
Full text online
More links
Kategorien
In stock of ZB MED Cologne/Königswinter
| Zs.B 5: Show issues | Location: Je nach Verfügbarkeit (siehe Angabe bei Bestand) bis Jg. 2021: Bestellungen von Artikeln über das Online-Bestellformular ab Jg. 2022: Lesesaal (EG) |
Order via subito
This service is chargeable due to the Delivery terms set by subito. Orders including an article and supplementary material will be classified as separate orders. In these cases, fees will be demanded for each order.