RESUMO
Having the means to share research data openly is essential to modern science. For human research, a key aspect in this endeavor is obtaining consent from participants, not just to take part in a study, which is a basic ethical principle, but also to share their data with the scientific community. To ensure that the participants' privacy is respected, national and/or supranational regulations and laws are in place. It is, however, not always clear to researchers what the implications of those are, nor how to comply with them. The Open Brain Consent (https://open-brain-consent.readthedocs.io) is an international initiative that aims to provide researchers in the brain imaging community with information about data sharing options and tools. We present here a short history of this project and its latest developments, and share pointers to consent forms, including a template consent form that is compliant with the EU general data protection regulation. We also share pointers to an associated data user agreement that is not only useful in the EU context, but also for any researchers dealing with personal (clinical) data elsewhere.
Assuntos
Encéfalo/diagnóstico por imagem , Disseminação de Informação , Consentimento Livre e Esclarecido , Neuroimagem , Sujeitos da Pesquisa , Humanos , Disseminação de Informação/ética , Consentimento Livre e Esclarecido/ética , Neuroimagem/éticaRESUMO
This article will examine the problem of disease transmission through organ transplantation from a civil liability perspective. Both fault liability and strict product liability might be possible. These two types of liability will be compared, while applying them to the actions of the central parties involved in organ donation and transplantation, namely the physician/hospital, the donor and the organ exchange organisation. While product liability is generally an easier way to obtain compensation than fault liability, it might nevertheless place too heavy a burden on the transplant professionals.
Assuntos
Transmissão de Doença Infecciosa , Responsabilidade Legal , Neoplasias/etiologia , Transplante de Órgãos/efeitos adversos , Europa (Continente) , Humanos , Doadores de Tecidos , TransplantadosRESUMO
In this article, the case of living organ donation by minors is discussed. A distinction can be made between minors who are in fact already competent and those who are not. Minors who are in fact competent, should be able to decide on organ donation under the same conditions as competent adults. Incompetent minors could be allowed to act as living organ donors under exceptional circumstances on the basis of a best interest test. Decisions on living organ donation by incompetent minors should be embedded into a procedural framework in which parental consent, the approval of an independent body of health professionals, and the minor's wishes play a substantial role.