Hdl Handle:
http://hdl.handle.net/10147/311115
Title:
Guidance for developing ethical research projects involving children
Authors:
Department of Children and Youth Affairs (DCYA)
Publisher:
Government Publications, Dublin
Issue Date:
Apr-2012
URI:
http://hdl.handle.net/10147/311115
Item Type:
Report
Language:
en
Description:
Why we need ethical guidance for children’s research Research with, and for, children is necessary because knowing about children and their lives and understanding the child’s perspective are key to protecting, promoting, and supporting their health and well-being (Department of Health and Children, 2000). There are specific issues arising from children’s and young people’s legal status, their knowledge and experience of the world, their differing levels of cognition and their relative lack of independence and autonomy, all of which require particular attention in order to ensure appropriate and ethical research practice. Aim of ethical guidance The aim of this guidance paper, produced by a working group on behalf of the Department of Children and Youth Affairs (DCYA), is to advise on good practice principles for undertaking research with children (defined in Ireland as people below the age of 18). Members of the working group are listed in the Appendix. This guidance, which builds on a report by Felzmann et al (2010), is based on legal or policy precedent and/or best practice principles. It is also driven by the principles of the United Nations Convention on the Rights of the Child, in particular Articles 2, 3, 4 and 6 (UN, 1989). The guidance is intended for all those who carry out research with, and for, children in Ireland. There is currently no single regulatory system and no body responsible for research ethics in Ireland. The most clearly regulated area of research is clinical trials, which must operate under the aegis of the EU Directive on Clinical Trials (Department of Health and Children, 2004) and which require review by a research ethics committee recognised by the Department of Health. Ethics relating to research outside this remit is covered primarily by research ethics committees (RECs) in health and social care organisations and in universities. The experience and competence of these RECs in relation to, for example, examining diverse methodologies vary greatly, as do their requirements and review procedures (Felzmann et al, 2010). The proposed Health Information Bill1 includes a regulatory framework for the collection, use, management and storage of personal health information, as well as provision for a new national structure for research ethics. The Health Information and Quality Authority (HIQA) will soon become the supervisory body under the EU Clinical Trials Regulations and has already established a national research advisory body. The Health Information Bill will make the HIQA the supervisory body for approved RECs for all other types of health research. Core ethica l principles and concepts in child-related research There are basic ethical principles that apply to all research. These include: ■■ a commitment to the well-being, protection and safety of participants; ■■ a duty to respect the rights and wishes of those involved; ■■ an obligation to address the issue of who ought to receive the benefits of research and bear its burdens; ■■ a responsibility to conduct high-quality scientific research; ■■ a commitment to communicate the results of research to relevant stakeholders and policy-makers. Based on these principles, a number of core ethical concepts arise in research. These are: 1. minimising risk of harm; 2. informed consent and assent; 3. confidentiality and anonymity. In relation to children’s research, a number of additional issues need to be addressed, namely: 4. child protection principles; 5. legal obligations and policy commitments in relation to children; 6. a child-centred, inclusive approach to research.
Keywords:
YOUNG PEOPLE; CHILD HEALTH; RESEARCH
Local subject classification:
ETHICS
ISBN:
9781406426793

Full metadata record

DC FieldValue Language
dc.contributor.authorDepartment of Children and Youth Affairs (DCYA)en_GB
dc.date.accessioned2014-01-09T11:36:15Z-
dc.date.available2014-01-09T11:36:15Z-
dc.date.issued2012-04-
dc.identifier.isbn9781406426793-
dc.identifier.urihttp://hdl.handle.net/10147/311115-
dc.descriptionWhy we need ethical guidance for children’s research Research with, and for, children is necessary because knowing about children and their lives and understanding the child’s perspective are key to protecting, promoting, and supporting their health and well-being (Department of Health and Children, 2000). There are specific issues arising from children’s and young people’s legal status, their knowledge and experience of the world, their differing levels of cognition and their relative lack of independence and autonomy, all of which require particular attention in order to ensure appropriate and ethical research practice. Aim of ethical guidance The aim of this guidance paper, produced by a working group on behalf of the Department of Children and Youth Affairs (DCYA), is to advise on good practice principles for undertaking research with children (defined in Ireland as people below the age of 18). Members of the working group are listed in the Appendix. This guidance, which builds on a report by Felzmann et al (2010), is based on legal or policy precedent and/or best practice principles. It is also driven by the principles of the United Nations Convention on the Rights of the Child, in particular Articles 2, 3, 4 and 6 (UN, 1989). The guidance is intended for all those who carry out research with, and for, children in Ireland. There is currently no single regulatory system and no body responsible for research ethics in Ireland. The most clearly regulated area of research is clinical trials, which must operate under the aegis of the EU Directive on Clinical Trials (Department of Health and Children, 2004) and which require review by a research ethics committee recognised by the Department of Health. Ethics relating to research outside this remit is covered primarily by research ethics committees (RECs) in health and social care organisations and in universities. The experience and competence of these RECs in relation to, for example, examining diverse methodologies vary greatly, as do their requirements and review procedures (Felzmann et al, 2010). The proposed Health Information Bill1 includes a regulatory framework for the collection, use, management and storage of personal health information, as well as provision for a new national structure for research ethics. The Health Information and Quality Authority (HIQA) will soon become the supervisory body under the EU Clinical Trials Regulations and has already established a national research advisory body. The Health Information Bill will make the HIQA the supervisory body for approved RECs for all other types of health research. Core ethica l principles and concepts in child-related research There are basic ethical principles that apply to all research. These include: ■■ a commitment to the well-being, protection and safety of participants; ■■ a duty to respect the rights and wishes of those involved; ■■ an obligation to address the issue of who ought to receive the benefits of research and bear its burdens; ■■ a responsibility to conduct high-quality scientific research; ■■ a commitment to communicate the results of research to relevant stakeholders and policy-makers. Based on these principles, a number of core ethical concepts arise in research. These are: 1. minimising risk of harm; 2. informed consent and assent; 3. confidentiality and anonymity. In relation to children’s research, a number of additional issues need to be addressed, namely: 4. child protection principles; 5. legal obligations and policy commitments in relation to children; 6. a child-centred, inclusive approach to research.en_GB
dc.language.isoenen
dc.publisherGovernment Publications, Dublinen_GB
dc.subjectYOUNG PEOPLEen_GB
dc.subjectCHILD HEALTHen_GB
dc.subjectRESEARCHen_GB
dc.subject.otherETHICSen_GB
dc.titleGuidance for developing ethical research projects involving childrenen_GB
dc.typeReporten
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