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A Practical Guide to Phylogenetics for Nonexperts
Published on: February 5, 2014
Making research central to good paediatric practice
Hugh T Davies1, Bob Phillips2,3, Jennifer Preston4
1Health Research Authority, London, UK.
Insights
Research involving children and young people (CYP) requires careful consideration of complexities and risks. This article proposes seven principles for ethical dialogue and decision-making in CYP research, emphasizing transparency and inclusivity.
Area of Science:
- Bioethics
- Pediatric Research
- Research Ethics
Background:
- International approaches to research involving children and young people (CYP) are often cautious or protective.
- These protective stances may stem from misconceptions that need to be addressed.
- Ethical considerations in CYP research are complex and involve potential risks.
Purpose of the Study:
- To address misconceptions surrounding research with children and young people (CYP).
- To explore the complexities and risks inherent in CYP research.
- To propose a framework for ethical dialogue and decision-making in this field.
Main Methods:
- The article is an introductory piece, outlining complexities and risks.
- It discusses the importance of involving CYP and their families in all research aspects.
- It proposes seven principles to guide the ongoing debate on CYP research ethics.
Main Results:
- The article identifies key areas for consideration: involving CYP and families, obtaining valid consent/assent, and reporting research findings.
- Seven principles are proposed to ensure an evidence-informed, transparent, balanced, conscientious, substantive, comprehensive, and revisable dialogue.
Conclusions:
- A collaborative and principled approach is necessary for ethical research involving children and young people (CYP).
- Adherence to the seven proposed principles will foster a more robust and inclusive debate on CYP research.
- Ensuring all legitimate interests are considered is a shared responsibility.
Abstract:
There is evidence abroad of a cautious if not protective approach to research involving children and young people (CYP). We are sensitive to these views but believe they are based on a misconception that we must address together. In this introductory article we look at the complexities and risks of this research, how we must involving CYP and their families in the all aspects of research, how to seek valid consent and assent and how research findings should be reported. Considering how we should conduct this ongoing debate, we outline seven principles that we believe should underpin the necessary dialogue between all with legitimate interest. Our debate should be: (1) evidence informed: arguments should be supported by appropriate and reasonably accurate factual claims; (2) transparent about the grounds for decisions; (3) balanced: arguments should be met by contrary arguments; (4) conscientious: we must be willing to talk and listen, with civility and respect; (5) substantive: arguments should be considered sincerely on their merits, not on how they are made or by who is making them; (6) comprehensive: all points of view held by significant portions of the population should receive attention; and (7) with procedures for revising decisions in light of challenges, and it should be our responsibility to ensure we have met all of these.
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