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1.
Med Law ; 30(3): 345-61, 2011 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-22191325

RESUMO

The necessity of taking into account the interest and opinion of the child was recently emphasized in the Belgian Constitution. The Belgian Act of August 22nd, 2002 on Patients' Rights introduced an important innovation concerning the minor child, in that the latter has since been authorized to exercise his or her patients' rights autonomously, as far as he or she is considered able to reasonably appreciate his or her interests. In some areas, the Belgian legislature has made certain reservations. For example, the minor child has no right to ask for euthanasia; several bills have been proposed in order to recognize it in some circumstances, but they have not been passed. Similarly, activities relating to medically assisted reproduction are not available to the minor, except in cases where there are medical indications. Finally, it might be relevant for the Belgian legislature to enact more specific protective provisions for the child participant in clinical trials.


Assuntos
Menores de Idade/legislação & jurisprudência , Direitos do Paciente/legislação & jurisprudência , Autonomia Pessoal , Aborto Legal/legislação & jurisprudência , Adolescente , Bélgica , Criança , Proteção da Criança/legislação & jurisprudência , Eutanásia/legislação & jurisprudência , Humanos , Cuidados Paliativos/legislação & jurisprudência , Obtenção de Tecidos e Órgãos/legislação & jurisprudência
2.
Biopreserv Biobank ; 14(3): 241-8, 2016 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-27082461

RESUMO

BACKGROUND: There is growing consensus that individual genetic research results that are scientifically robust, analytically valid, and clinically actionable should be offered to research participants. However, the general practice in European research projects is that results are usually not provided to research participants for many reasons. This article reports on the views of European experts and scholars who are members of the European COST Action CHIP ME IS1303 (Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives) regarding challenges to the feedback of individual genetic results to research participants in Europe and potential strategies to address these challenges. MATERIALS AND METHODS: A consultation of the COST Action members was conducted through an email survey and a workshop. The results from the consultation were analyzed following a conventional content analysis approach. RESULTS: Legal frameworks, professional guidelines, and financial, organizational, and human resources to support the feedback of results are largely missing in Europe. Necessary steps to facilitate the feedback process include clarifying legal requirements to the feedback of results, developing harmonized European best practices, promoting interdisciplinary and cross-institutional collaboration, designing educational programs and cost-efficient IT-based platforms, involving research ethics committees, and documenting the health benefits and risks of the feedback process. CONCLUSIONS: Coordinated efforts at pan-European level are needed to enable equitable, scientifically sound, and socially robust feedback of results to research participants.


Assuntos
Dever de Recontatar/legislação & jurisprudência , Pesquisa em Genética/legislação & jurisprudência , Dever de Recontatar/ética , Comitês de Ética em Pesquisa/legislação & jurisprudência , Comitês de Ética em Pesquisa/organização & administração , Europa (Continente) , Pesquisa em Genética/economia , Pesquisa em Genética/ética , Humanos , Achados Incidentais , Inquéritos e Questionários
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