Enhancing the ethical conduct of genetic research: investigating views of parents on including their healthy children in a study on mild hearing loss
AuthorGillam, L; Poulakis, Z; Tobin, S; Wake, M
Source TitleJOURNAL OF MEDICAL ETHICS
PublisherB M J PUBLISHING GROUP
AffiliationPaediatrics Royal Children'S Hospital
Document TypeJournal Article
CitationsGillam, L., Poulakis, Z., Tobin, S. & Wake, M. (2006). Enhancing the ethical conduct of genetic research: investigating views of parents on including their healthy children in a study on mild hearing loss. JOURNAL OF MEDICAL ETHICS, 32 (9), pp.537-541. https://doi.org/10.1136/jme.2005.013201.
Access StatusAccess this item via the Open Access location
Open Access at PMChttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC2563404
C1 - Journal Articles Refereed
Clinical genetic research is often regarded as more ethically problematic than other forms of research, and in some countries is subject to specific regulation, requiring researchers to follow specialised guidelines. In this paper, an approach to enhancing the ethical conduct of genetic research is proposed, which is believed to be more effective than simply attempting to follow general guidelines. The potential concerns, likely areas of misunderstanding and negative reactions of the participant group are systematically investigated before starting a study on genetics. This would constitute, in effect, an ethical pilot study, similar to a feasibility pilot study to test equipment, procedures and logistics. The findings of the ethical pilot study would be used to help in designing ethically important aspects of research protocol, such as recruitment procedures, written and other information for potential participants, informed consent processes and reporting of results including ambiguous or uncertain results.
KeywordsPublic Health and Health Services not elsewhere classified; Public Health not elsewhere classified
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