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Her father disapproved strongly (and justly) of the engagement and informed her that if she married young K. he would not leave her a penny of his money.
Without this proactive engagement and informed challenge the taskforce report will not deliver the services we deserve and need; the report provides some of the tools to ask better questions locally and nationally.
This paper draws on experiences around community engagement and informed consent during a genetic cohort study in Kenya to contribute to understanding the strengths and challenges of community engagement in supporting ethical research practice, focusing on issues of communication, the role of field workers in 'doing ethics' on the ground and the challenges of community consultation.
A Community Engagement and Consent Workshop held in Kilifi, Kenya, in 2011 brought together groups engaged in research and practice on community engagement and informed consent from across the globe and with a wide diversity of disciplinary backgrounds.
Marsh and her associates studied community engagement and informed consent in a genetic project on severe childhood diseases in Kenya [ 24].
Experiences with community engagement and informed consent for genetic studies in Africans [ 28] and for obtaining DNA samples from four populations including the Yorubas from Ibadan Nigeriaa) have also been reported [ 29].
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Our research will produce a uniquely comprehensive understanding of the preferences of the public on when and how they would like engagement; this information can be used by health care agencies and decision-makers to tailor public engagement methods and inform future research on public engagement methodology.
We are currently conducting a randomized controlled trial to assess the incremental effectiveness of educational materials and the social worker intervention on improving patients' and families' engagement in shared and informed consideration of LKT.
Study Phase 1 involved the evidence-based development of culturally sensitive written and audiovisual educational materials as well as a social worker intervention to encourage patients' engagement in shared and informed consideration of LKT.
This highlights the importance of sensitization in the community engagement process and informs the SEACO operations about where effort might be put to enhance recruitment.
Drawing on a wider set of resources such as the use of cartoons contributes to this process through developing a rigorous and theoretically informed approach to patient engagement and information.
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Justyna Jupowicz-Kozak
CEO of Professional Science Editing for Scientists @ prosciediting.com