PubMed · 14748231
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Carol Ann Quinsey. 2004. Developing E-health standards for Web sites.. https://pubmed.ncbi.nlm.nih.gov/14748231/
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Initiation and implementation of nontherapeutic genetic research projects, sponsored by developed countries and conducted in developing countries, requires careful consideration and awareness of procedures that ensure ethical research. This article reviews, and discusses controversies surrounding, the ethical principles established internationally and recommended by institutions in the UK for designing and implementing nontherapeutic genetic research studies. Before project commencement, the researcher should submit proposals to appropriate ethics committees and, wherever possible, seek guidance from experienced researchers. The researcher must also be aware of his/her responsibilities when conducting research with human participants. Responsibilities include respecting autonomy, privacy and confidentiality of participants, respecting social and cultural differences, providing appropriate information to participants, obtaining informed consent and offering appropriate compensation for participation. Finally, researchers involved in human genetics studies must also consider specific issues and public concerns when collecting biological samples. This includes using anonymised samples, considering future use of samples and ensuring confidentiality of results.
OBJECTIVE: To create a public health data resource for Scotland that is based on a socio-ecological model of the determinants of health and would, therefore, meets the needs of the emerging public health agenda. DESIGN: Action research, in which the approach moved logically through stages of action (conception, feasibility study, pilot projects, leading to a national set of integrated health and well-being profiles). Each stage built on the results of the previous research. RESULTS: The conceptual stage identified the need for an approach to public health data that kept pace with the increasingly accepted socio-ecological models of the determinants of health. A feasibility study concluded that sufficient data were available to populate the health fields that represented the important determinants of health. At this time strengths and weakness in data were defined. This led to the articulation of a 'vision' for integrated public heath data in Scotland that was the subject of a wide consultation. Pilot studies provided local stakeholders with imaginatively presented data (on population demographics, health and function, behaviour, social environment, economy, physical environment, morbidity and mortality) for their local communities. The response to these was so positive that a demand was created for a comprehensive set of 'community profiles'. These, in addition to parliamentary constituency profiles, have now been created and widely disseminated. CONCLUSIONS: It has been possible, despite many difficulties, to develop approaches to public health information that are informed by the socio-ecological model of health and create outputs that represent a significant advance on previous approaches to public health data. This is a work in progress and many issues remain unresolved. Interaction with others engaged in parallel tasks will facilitate the next steps.
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