RESUMO
This paper draws from the literature on collective action and the governance of the commons to address the governance of genetic data on variants of specific genes. Specifically, the data arrangements under study relate to the BRCA genes (BRCA1 and BRCA2) which are linked to breast and ovarian cancer. These data are stored in global genetic data repositories and accessed by researchers and clinicians, from both public and private institutions. The current BRCA data arrangements are fragmented and politicized as there are multiple tensions around data ownership and sharing. Three key principles are proposed for forming and evaluating data governance arrangements in the field. These principles are: equity, efficiency and sustainability.
Assuntos
Bases de Dados Genéticas/ética , Bases de Dados Genéticas/legislação & jurisprudência , Proteína BRCA1/genética , Proteína BRCA2/genética , Neoplasias da Mama/genética , Feminino , Predisposição Genética para Doença , Equidade em Saúde , Humanos , Neoplasias Ovarianas/genética , Responsabilidade SocialRESUMO
Based on the experiences from an ongoing IT implementation project, this paper illustrates the complexity of large scale projects through the concept of diversity. The analysis shows how, no matter how mature the project becomes at coping with local diversity, it is still vulnerable to contextual diversity; especially when this is politicized. The paper concludes by pointing to the special responsibilities this puts on higher level decision makers.
Assuntos
Registros Eletrônicos de Saúde/instrumentação , Informática Médica/métodos , Atitude do Pessoal de Saúde , Difusão de Inovações , Humanos , Modelos Organizacionais , Noruega , Inovação Organizacional , Política , Desenvolvimento de Programas , Avaliação de Programas e Projetos de SaúdeRESUMO
During my studies of the implementation of a new hospital wide information system for medical charts, the project's impact on patient safety emerged as a topic of interest for the clinicians involved. While Karl Weick [1] applies the law of requisite variety to illustrate the correlation between professional variety and medical errors, it is argued here that a similar notion could be applied to the variety in modes of information in hospitals. Based on this, the question is raised whether or not the introduction of standardized computer systems at the expense of existing solutions could pose a threat to this variety, and subsequently to the hospital's resilience in handling uncertainty.
