RESUMO
The paper documents a series of data integration workshops held in 2006 at the UK National e-Science Centre, summarizing a range of the problem/solution scenarios in multi-site and multi-scale data integration with six HealthGrid projects using schizophrenia as a domain-specific test case. It outlines emerging strategies, recommendations and objectives for collaboration on shared ontology-building and harmonization of data for multi-site trials in this domain.
Assuntos
Informática Médica/organização & administração , Integração de Sistemas , Educação , Humanos , Oncologia , Reino UnidoRESUMO
The development of biobanks worldwide is considered to hold great promise for the provision of new insights into the connection between genes and environment and to have a positive impact on public health. There is, however, a constant tension between the rights of individuals on one hand and the progress of research on the other hand. One of the rights developed to protect the autonomy and free will of participants and reflecting the basic principles regulating medical research according to the Nuremberg Code and the Declaration of Helsinki is the right to be able to withdraw from the biobank at any time as an expression of the participant's free will and autonomy. There are two important problems to withdrawing, namely the 'what' and 'when'--what can be withdrawn and when can it be withdrawn.
Assuntos
Bases de Dados Factuais/ética , Bases de Dados Factuais/normas , Sistemas Computadorizados de Registros Médicos/ética , Sistemas Computadorizados de Registros Médicos/normas , Guias como Assunto , Humanos , Consentimento Livre e Esclarecido , Autonomia Pessoal , Privacidade , Recusa de ParticipaçãoRESUMO
This article highlights and summarises the key developments in medical law in the jurisdictions of the United Kingdom in 2005 and to April 2006. Topics are mental health and mental capacity, data protection, freedom of information and the impact on health data, the Human Tissue Act, genetic research databanks, Human Fertilisation and Embryology Act--Review of the legislation, consultations and related case law, developments in embryo and embryonic stem cell research, clinical trials and human subject research, medical futility, and physician assisted dying.