title: Enhancing the ethical conduct of genetic research: investigating views of parents on including their healthy children in a study on mild hearing loss.
abstract: 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.
authors.affiliation: Centre for the Study of Health and Society, University of Melbourne, Parkville, Victoria 3010, Australia. l.gillam@unimelb.edu.au
authors.forename: L
authors.initials: L
authors.lastname: Gillam
authors.forename: Z
authors.initials: Z
authors.lastname: Poulakis
authors.forename: S
authors.initials: S
authors.lastname: Tobin
authors.forename: M
authors.initials: M
authors.lastname: Wake
mesh_terms: D002648:Child; D032984:Ethics, Research; D005260:Female; D005821:Genetic Techniques / Q000941:ethics / Q000523:psychology; D007722:Health Knowledge, Attitudes, Practice; D006319:Hearing Loss, Sensorineural / Q000235:genetics*; D006801:Humans; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D018579:Patient Selection / Q000941:ethics*; D010865:Pilot Projects; D018907:Privacy / Q000523:psychology