Child participation in research

Context of legal framework and ethical codes of conduct: Data Protection Act 2000^[1]

Age:  n/a

Consent: In social research - Children might participate in surveys provided that the child’s parent has given his/her consent^[2]

Role of children: n/a

Role of parents: n/a

Institutions: n/a

Ethical approval: n/a

Other sources: ^{[3] [4] [5] [6]}

• No specific regulation/guidelines except general rules on personal data protection and medical research. Very few examples or current practices that would allow recommendations/conclusions to be drawn on how to proceed with interviewing children


• Some non-medical universities voluntarily established their own ethics commissions and it seems that most Austrian universities are currently making an effort to establish ethics commissions


• Public bodies when funding research projects simply make reference to ‘generally accepted standards’


• Current practice: Children aged 12 to 19 were invited to participate in an online survey. Parental consent or any other qualification was not required

Context of legal framework and ethical codes of conduct: Law of 8 December 1992 on the protection of privacy in relation to the processing of personal data ^[7]

Age:  n/a

Consent:  n/a

Role of children: n/a

Role of parents: n/a

Schools: When parents are not involved in the carrying out of the research, the director, vice-director or teacher will provide the consent in place of the parents. This consent will also not always be given in a written form, as there is no general consensus on how consent should be given ^[8]

Institutions: n/a

Ethical approval: n/a

Other sources: ^[9]

• No specific regulation/guidelines except general rules on personal data protection and medical research. Informed consent of parents is always required and children must be given the opportunity to express their views


• According to current practice for research in school settings, the consent of the school director or teacher suffices and replaces parental consent


• The existence of several codes of ethics and good conduct such as the Ethical Code for scientific research in Belgium seems not to be applied and have in any case almost no concrete implications for research involving children

Context of legal framework and ethical codes of conduct: Child Protection Act ^[10]; Ethical Code for the People Working with Children ^[11]; Ethical Code of the Bulgarian Media ^[12] ; Protection of Personal Data Act, art 5 ^[13] 

Age: n/a

Consent:  Non-Obligatory: researchers have to inform the family and involve children in the decision-making process. Every child has the right to freedom of expression of opinion and the right to formulate own views and to freely express them ^[11]

Role of children: When the child is over 14, his/her consent is needed ^[10]

Role of parents:  Current practice - Parental consent is always needed ^[14]

Schools: n/a

Institutions: Social Assistance Department (which is the body that officially applies measures applied to children at risk by the Child Protection Departments subordinated to the Social Assistance Departments) should also give written opinion if the research includes collection and dissemination of personal data

Ethical approval: n/a

Other Sources:  ^[15]

• According to the regulations that apply to medical research and the non-binding Ethical Code for People Working with Children it could be assumed that the consent of the parent is always needed and consent of the child is needed when the child over 14


• No specific regulation/guidelines except general rules on personal data protection and medical research


• When a child is placed under protection measures, data about him/her cannot be disseminated without the written opinion of the protection body that undertook the measure (which usually is the local Child Protection Department)


• Under the Child Protection Act every child has the right to freely express opinions on each matter of his/her interest. The child can seek cooperation from the authorities and the people who are in charge of protecting him/her.  Every child has the right to be informed and consulted by the child protection authority without his/her parents or the people who take care of him/her being informed if this is necessary so that the best interests of the child are protected and the provision of this information could harm these interests

Context of legal framework and ethical codes of conduct: Code of Ethics for Research Involving Children ^[16] ; National Pedagogical Standard for Preschool Education ^[17], National Pedagogical Standard for Elementary Education ^[18], National Pedagogical Standard for Secondary Education ^[19]; Act on the Protection of Patients’ Rights ^[20]

Age: < 14 parental consent

> 14, child consent ^[16]

Consent:  Informed and obligatory

Parental consent for <14 children

>14 children consent oral or written

Duty to inform the participants of the results of the research

Role of children: Children between 7 and 14: have to be informed about the research in terms appropriate to their age

Role of parents: Parents or guardians have to be informed about the research even when parental consent is not required

Schools: Written consent from the parents of each child involved in the research
Ethical approval is needed from the Ministry of Science, Education and Sports, and from the educational institution's director. Researchers have to submit a request and description of the project indicating age range of children they intend to use as subjects and submit the instrument (e.g. questionnaire) plus consent form letter

Procedure length: between three to six weeks ^{[17]  [18] [19]}

Institutions: n/a

Ethical approval: Approval needed from the relevant institutional ethics committee ^[16]

Other Sources: ^[21]

• Informed parental consent required for chldren <14


• Parents or guardians have to be informed about all aspects of the research


• Schools: written consent from the parents and ethical approval from the Ministry of Science, Education and Sports, and from the educational institution’s director. Procedure length: between three to six weeks


• When research involves vulnerable groups at schools, the Ministry of Science, Education and Sports consults an expert at the Education and Teacher Training Agency.

Context of legal framework and ethical codes of conduct: Operational guidelines of the Cyprus National Bioethics Committee (CNBC) ^[22]; Centre of Educational Research and Evaluation (CERE), Guidelines for the submission of the online application ^[23]

Age: n/a

Consent:  Practice - Parental written consent form and child's opinion should be respected ^[24] 

Role of children: Practice - Child opinion should be respected

Role of parents: n/a

Schools: Practice - Written consent is required from the student's parents, when a study is conducted in public schools. Obligatory approval is needed from the Directorates of the Ministry of Education and Culture (MoEC) through the Center of Educational Research and Evaluation (CERE).  The whole approval procedure may take four to five weeks. After the completion of the research study, the researcher has to submit a summary of the results to the MoEC. ^[23] [25]

Institutions: Approval needed from the Director of Social Welfare Services (replacing parental consent) ^[26] 

Ethical approval: n/a

• The research in school setting is well regulated; researchers can apply online and get ethical approval in around 5 weeks. Even if the procedure looks bureaucratic, the fact that the procedure exists and provides a clear frame can be considered as a best practice and could facilitate the work of the researchers


• Written consent from the parents and child's opinion respected


• Several codes of ethics/guidelines (both in medical and social science) can provide an idea of what are the requirements concerning consent


• The CERE provides a comprehensive checklist of ethical considerations that researchers should meet. This facilitates researchers response to aspects related to research ethics while conducting research in schools (with children)

Context of legal framework and ethical codes of conduct: Ethical Framework of Research by Ministry of Education ^[27] , Youth and Sports Esomar guidelines ^[28] ; Ethical Regulations of Czech Association for Social Anthropology; Psychology, Sociology, Pedagogy

Age: Informed consent by parents for <14 ^[27] [28] 

Consent:  Non-obligatory. No regulation on the need of written informed consent but written form is preferred ^[27]

Role of children: Child’s expression of its voluntary participation. Non-obligatory

Role of parents: Informed consent by parents/guardians. Non-obligatory

Schools: <14: Informed consent from teacher or schoolmasters. Non-obligatory for pre-school age: presence of  parents or other person close to child ^[28] 

Institutions: n/a

Ethical approval: n/a

Other Sources: ^{[29] [30] [31] [32] [33] [34]}
 

• Informed consent by parents for children <14 following ESOMAR guidelines


• No mandatory regulation on consent: important but not mandatory Ethical Framework of Research by Ministry of Education, Youth and Sports. No regulation specifically addressing children in social research


• Non-obligatory codes of ethics for social research, rarely specifically addressing children. References to international bodies and professional associations


• In case of using personal data, registration by The Office for Personal Data Protection
   

Context of legal framework and ethical codes of conduct: Act on Processing of Personal Data ^[35] ;  Guidelines of the Danish Social Science Research Council (DSSRC) ^[36] ; NCHRE ^[37]

Age: n/a

Consent: Non-Obligatory

Role of children: The child must receive information orally

Role of parents: The parents must receive sufficient information

Schools: n/a

Institutions: n/a

Ethical approval: n/a

Other Sources: ^[38]

• No specific regulation/guidelines except general rules on personal data protection and medical research. Very few examples or current practices that would allow recommendations/conclusions to be drawn on how to proceed with interviewing children


• Promising practice in the medical field where the NCHRE issued a manual on how to provide sufficient information to the research participants involved in a medical intervention. They issued a special manual on how to provide relevant information to participants aged between 15 and 17 years


• Except few exceptions, data concerning race or ethnic origin, political, religious or philosophical views,  trade union membership or health or sexual issues cannot be subject to data processing

Context of legal framework and ethical codes of conduct: Personal Data Protection Act; ^[39] Code on Market and Social Research (ICC/ESOMAR) ^[40]

Age: n/a

Consent: Non-obligatory. The consent of the parent shall first be obtained before interviewing children. Oral consent is enough ^[40]

Role of children: n/a

Role of parents: n/a

Schools: The teacher can consent. Oral consent is enough (Non-obligatory) ^[40]

Institutions: n/a

Ethical approval: In absence of ethic committee for social research, some researchers submit applications to the medical ethics committee (Tallinn Medical Research Ethics Committee Research Ethics Committee of the University of Tartu ^[42] and the Tallinn Medical Research Ethics Committee ^[43]). The following information needs to be provided to the Commitee in Tartu: description of the research methodology that includes questionnaires and tests; an analysis of ethical aspects of the research; the information sheets for the informants and the forms of consent; list of researchers carrying out the research, their academic qualifications; information about the financing of the research ^[42]

Other Sources: ^[41]

• No specific regulation/guidelines except general rules on personal data protection and medical research. Very few examples or current practices that would allow recommendations/conclusions to be drawn on how to proceed with interviewing children


• In absence of specific regulations applying to social research, the EU and international standards are often referred as the minimum standards to be respected when interviewing children


• When the research involves the processing of personal data of children (not anonymised)  the informed consent of the parent shall first be obtained before processing
   

Context of legal framework and ethical codes of conduct: Personal data Act (1999) ^[44] ; TENK-Recommendations from the National Advisory board on research ethics-TENK ^[45] ; Child Custody and Right of Access Act (362/1984) ^[46]

Age: n/a

Consent: No specific provision for children. Recommendations from the National Advisory board on research ethics-TENK ^[44] [45]

Role of children:  Researchers must always respect a children's autonomy and the principle of voluntary participation

Role of parents: No parental consent required if research is pre-school or school, no individual identification information is collected, and school principal thinks research is useful for institutions. When consent is not sought from parents, and children under 15, an ethical pre-evaluation should be conducted.
Parent has the right to deny a child's participation in other than medical research ^{[44] [45] [46]}

Schools: Practice - May differ from municipality to municipality, but usually approval from local school board is necessary.
Example: Helsinki region requires written consent from parents and from children  (Approval of the Helsinki board takes around 1 month time) ^[45] [47]

Institutions: In institutional settings such as prisons, child protection institutions, hospitals, homes for the elderly and similar places, it is recommended that consent is sought from each and every subject ^[45]

Ethical approval: Not required for social research, but increasingly used in the fields of nursing, psychology and physical education. The ethical approval is sought through regional ethics committees. Universities and other institutions can also have their own ethical approval^[45]

Other Sources: n/a

• No parental consent is needed for studies with children >15


• Authorisation required when doing research in schools may differ from region to region. If school-based research, need to check the requirements with each municipality, as they might differ


• Not regulated by law, except general rules on personal data protection applying to all data subjects. Recommendations from the National Advisory board on research ethics should be followed


• A survey done with researchers specialised in children in 2010 concluded that the administrative obstacles, ethical norms and permit practices are incompatible with research interests


• A social research plan must be submitted to ethical review, inter alia, if the subjects are children under the age of 15 and i) the study is not part of the normal activities of a school or an institution of early childhood education and care; and ii) the data are collected without parental consent and without providing the parents or guardians the opportunity to forbid the child from taking part in the study.


• There are several advisory boards concerning children in research: ETENE, TUKIJA and ethical boards for hospitals.

Context of legal framework and ethical codes of conduct: French Data Protection Authority (CNIL) 'Education Guide' and the 'Higher Education and Research Guide’ ^[48] ; France, Public Health Code (Code de la santé publique), article L1122-1-1 ^[49] ; Code of Education (Code de l’éducation) ^[50]

Age: n/a

Consent: n/a

Role of children: n/a

Role of parents: n/a

Schools: When research is undertaken in both state and private schools, the consent of the parents or the children is never expected. However, French law requires that information on the research being conducted is provided to the families, which in turn allows them, if they wish, not to send their children to an establishment undertaking research. Students' right to prior information must be guaranteed. The survey questionnaire sent to students should mention the wording of Law No. 78-17 of 6 January 1978 relating to data protection and civil liberties ^[50]

Institutions: n/a

Ethical approval: n/a
 

• No specific regulation/guidelines except in the medical field


• Very few examples or current practices that would allow recommendations/conclusions to be drawn on how to proceed with interviewing children
   

Context of legal framework and ethical codes of conduct: Association of Market and Social Research Agencies - ADM guidelines

Age: n/a

Consent: Depends on Federal States and context

Role of children: n/a

Role of parents: n/a

Schools: In some States minors up to age of 18 written informed consent by parents
Berlin only < 14; north-Rhine Westphalia also exceptions possible, e.g. that head teacher can approve
Most States demand approval from respective supervisory school authority (Schulaufsichtsbehoerde), a governmental body: Obligatory  ^[51]

Institutions: Research in juveniles detention centres (14-24); approval by responsible ministers of justice. Situation comparable to school settings in regard to federal responsibilities

Ethical approval: Ethical codes of conduct by scholarly associations (Sociology, Psychology, Education), but no remarks on research involving children
Schools: no specific time frame for the procedures of approval, time-consuming, differs from state to state ^{[52] [53] [54]}

Other Sources: ^[55]

• Only regulations in school context and medical field are obligatory with regard to parental consent and ethic committees


• There are large differences between Federal States with some States requiring informed consent by parents up to the age of 18 and time consuming procedures


• In any other contexts parental consent is necessary up to the age of 14


• For social research ethical codes of conduct by professional associations apply


• A good example of type of information given for informed consent are the ADM (Association of Market and Social Research Agencies) guidelines

Context of legal framework and ethical codes of conduct: Civil Code ^[56] ; Personal Data Law ^[57] ; Hellenic Data protection authority and self-regulatory code of advertisement & communication ^[58] ; Code of media Ethics; Law 2619/1998 ^[59] , Law 3984/2011 ^[60]

Age: Different degrees of responsibility from 10, 14 and 15 years ^[56]

Consent: n/a

Role of children: Obligatory - Child consent required in school research

Role of parents: Parental consent is required when research in school, but no specification of age groups. Parental consent is required always for children with disabilities.

Schools: There is a special form on written consent for parents and children in the website of the Hellenic School Network.
In cases of children with disabilities - There is in addition the approval by the Special education dept. in the Ministry of Education
Approval of Ministry of Education (takes between 2 weeks and 9 months, in cases of academic research) and if sensitive data is collected, then extra permission from Hellenic Data Protection authority is necessary
^[61]

Institutions: Researchers apply to institutions, who forward to Ministry of Health or Ministry of Justice. If personal data are necessary, then also approval by Data Protection authority is necessary ^[62]

Ethical approval: n/a

Other Sources: n/a

• In school, written consent of parents and children, and approval of the Ministry of Education is required. No information on age groups. No clarity on ages


• Not regulated by law, except general rules on personal data protection.


• Different Code of Ethics, but no information on age groups


• In cases of children with disabilities in school settings: There is in addition the approval by the Special education dept. in the Ministry of Education
   

Context of legal framework and ethical codes of conduct: Act on informational self-determination and freedom of information ^[63] ; Codes of ethics of different Universities (psychology departments) ^[64]

Age: n/a

Consent: Obligatory parental consent is required for children <16, if processing of personal data. Consent of children >16 is sufficient ^[63]

Role of children: Oral consent if under 14 and written consent over 14 ^[64][65]

Role of parents: Parental consent for children <16
Some codes of ethics in universities suggest parental consent up 18 ^[64], ^[65]

Schools: n/a

Institutions: n/a

Ethical approval: Different practices according to University, usually all projects including children require ethical approval ^{[64] [65] [66]}

Other Sources: n/a

• If processing of personal data, the law requires parental consent only for children under 16 years


• There are several codes of ethics in universities suggesting parental consent up to the age of 18


• Different practices regarding ethical approval depending on University; usually all projects including children require ethical approval

Context of legal framework and ethical codes of conduct: Data protection acts 1988 and 2003 ^[67] ; Ethical review and children’s research in Ireland, Office of the Minister for Children and youth affairs (2010) ^[68] ; Statutory instruments N 190, 878 and 374 ^[69]

Age: Data protection acts with no specific reference to children ^[67]

Consent:  No standardised regulations

Role of children: The review requires further involvement of children. The current practice gives a more prominent role to parents than to children ^[68]

Role of parents: Practice seems to require parental consent for children up to 18. For adolescents the need for parental consent depends from each individual ethical committee

Schools: n/a

Institutions: n/a

Ethical approval: Usually a Research Ethics Committee is formed for the specific project. There are many local or issue-specific Committees in different institutions and universities. No national coordination/overseeing

Other Sources: n/a

• The general practice seems to require parental consent for children up to the age of 18. For adolescents the need for parental consent depends sometimes from each individual ethical committee


• Not regulated by law, except general rules on personal data protection applying to all data subjects


• Ethical Committees are created for a particular project, theme or institution


• Interesting guidelines on research with children: 1) The Children’s research centre- ethical guidelines, Trinity college, Dublin 2) Guidelines and checklist for research with children with disabilities, National disability authority, 3) Guidance for developing ethical research projects involving children’ published by the Department of Children and Youth Affairs in 2012.


• Office of the Minister for children has initiated several reports in order to standardised processes across research ethics committees


• In context of medial research : Operational Procedures for Research Ethics Committees, prepared by the Irish Council for Bioethics, which require parental consent for all research with children or person with disabilities

Context of legal framework and ethical codes of conduct: Civil Code (1942)^[70], Personal data Act (2003)^[71], different deontological codes published by the National Data Protection Authority ^[177] and by professional associations

Age: There are several codes of ethics of professional associations

Role of children: If child ability to understand the request, then also informed consent from child is necessary (Non-Obligatory) (ibidem)

Role of parents: Informed consent of parents. Non-obligatory (ibidem)

Schools: In addition to the info above, also informed consent of headperson or principal of school: Non-obligatory (ibidem)

Institutions: n/a

Ethical approval: n/a

• Not regulated by law, except general rules on personal data protection applying to all data subjects


• No clarity on consent requirements or age groups


• A need for ethical approval will depend from each ethics Committee


• Different codes of ethics


• Not determined- “particular attention when research with vulnerable groups: babies, children, people with mental disability and people who are institutionalised, hospitalised or in detention”.

Context of legal framework and ethical codes of conduct: Protection of the rights of the Child Law ^[72]; Personal Data protection law ^[73] ; Code of the Latvian sociological association ^[74] ; Institute of Sociological Research ^[75] ; Code of the Latvian sociological association ^[76]

Age: n/a

Consent:  If personal data processing, no specifics on children, general consent of data subject.
The sociological association requires parental consent for children younger than 16.
According to general practice, there is no need for parental consent ^{[72] [73] [74]}

Role of children: Informed consent of all research subjects, including of children below 16 years to the extent they are able to give it ^[74] 

Role of parents: Parental consent required for children <16, unless 1) research imposes a minimum risk to the child, or 2) the informed consent of parents is not a reasonable requirement (e.g. abused children, use of drugs)
Practice: some examples of research on sensitive issues (e.g. drugs) did not require parental consent ^[74] [75]

Schools: Practice - Consent by school director and children. In research with children of 7 years, also parental consent ^[75]

Institutions: Approval of authorities and children

Ethical approval: No approval, but possibility to complain about sociologist to the Sociological Association ^[74]

Other Sources: ^[77]

• The sociological association requires parental consent for children younger than 16, other examples of research in school have only asked for directors’ approval and children’s consent


• According to general practice, there is no need for parental consent of parents. Sociological code also accepts no need for it for children over 16 years


• Not regulated by law, except general rules on personal data protection applying to all data subjects


• There are different codes of professional groups and practices

Context of legal framework and ethical codes of conduct: Law on the Legal protection of Personal Data ^[78] ; Civil Code ^[79]

Age: Civil Code- Children between 14 and 18 certain capacity to act
Research with children between 16 and 18 usually does not need authorisation of parents ^{[78] [79] [80]}

Consent:  Practice: Written consent for children <16 ^[80] 

Role of children: Practice: Children consent >16
Opinion of the child must be taken into account  ^[80] [81]

Role of parents: Written consent for children <16
In most cases of psychological research, active parental consent is acquired for all children ^[80]

Schools: Practice - Approval from school administration or head teachers. If research does not cover sensitive data (as above) parental consent is often not required for children >16

Institutions: Example of research on sexual abuse in residential institutions: informed consent of administration of residential institutions (i.e. legal guardians)^[83]
For matters related to research in juvenile detention/imprisonment institutions. Practice requires permission of administration and of the child. (Prison  Department under the Ministry of Justice or imprisonment institutions directly) ^[84]

Ethical approval: n/a

Other Sources:  ^[82]  [85]
 

•  The practice does not require parental consent for children over 16 years


• Not regulated by law, except general rules on personal data protection applying to all data subjects


• International codes of conduct are followed. Since 2009 there is a national association of childhood researchers


• Parental consent is always required when: person’s racial or ethnic origin, political opinions, religious, philosophical beliefs, membership in trade unions, health, sexual life and criminal record
   

Context of legal framework and Ethical codes of conduct: Civil Code ^[88] , NCDP (National Commission for Data Protection) ^[86], NCER (Comité National d’Ethique et de Recherche) ^[90]

Age: Informed consent by parents for <14 ^[86]

Consent:  Non-obligatory Signed consent from parents is recommended as best practice. For all children <12, recommended <14 by parents and children

Role of children: for children between 12 and 14 consent of children plus parental consent is recommended. Non-obligatory

Role of parents: Informed consent for children <14. Non-obligatory, recommended

Schools: Information to be provided - objective, contribution, anonymity, free participation, questionnaire for parents, stamped envelope ^[87]

Institutions: n/a

Ethical approval: Obligatory ethical approval of research by national body if personal data is used. No specific  information on children and age groups. Guidelines highlight ethical issues particularly addressing children and informed consent ^[86] [89]

Other Sources:  ^[91] [92]

•  Recommendation for informed consent by parents for children <14; Informed consent of children >12


• Obligatory authorisation/ethical approval of research by national body if personal data is used but no specific information on children and age groups allowing varying intepretations and modes of implementation. Data gathering of sensitive data may become difficult


• Online research. Practice: 12-17, mailing to directors forwarded to class teachers, no way to retrace identifying account, no socio-economic background information, not asked to sign consent form

Context of legal framework and ethical codes of conduct: Data Protection Act ^[93] ; Criminal Code; Civil Code ^[94]

Age: 18, where parents jointly represent their children ^[94]

Consent: Parent till up to the age of 12; >12 legal representative additionally consent by children should be considered. ^[95] When processing personal data the consent of the parents is required for children up to 18 years.

Role of children: n/a

Role of parents: n/a

Schools: Ethical Approval is obligatory in schools. Written consent by parents, consult with Head of Schools, right to object any request. ^[97]

Institutions: Children under care - Ethical approval by children and young persons’ advisory board, then from child participating ^[98]

Ethical approval: Non-Obligatory - By UREC: 30 days
By FSWS research office in case of research applications, Codes of Ethics of American Psycholgocial Association (APA), time frame can vary ^[95] [96]

Other Sources: ^[99] [100]
 

• Obligatory regulations in the context of state schools as well as with regard to sensitive data and vulnerable groups


• Research with children under care need specific ethical approval


• Approval by Research Ethics Committee is necessary for funding and publishing


• Ethical codes of conduct in line with professional associations, specific attention needs to be paid to the different ethics committees


• Sensitive data: Where any information is derived by any teacher, member of a school administration;or any other person acting in the parent's place or in a professional capacity in relation to a minor and states, such information may be processed if such processing is in the best interests of the child
  
   

Context of legal framework and ethical codes of conduct: Protection of personal data act ^[101]; Code of conduct for research and statistics ^[102]

Age: Processing of personal data of children under 16 (if no “legitimate interest”) requires parental approval. Over 16 children themselves is enough ^[101]

Consent: Processing of personal data, only with unambiguous consent of the data subject unless research sponsor possess “legitimate interest”. There are several codes of conduct ^[101] [102]

Role of children: Consent of children over 12 in secondary school is sufficient
Children between 12 and 16 should be included as much as possible ^[102] [103]

Role of parents: Parental consent for children between 12 and 16
Even if “legitimate interest”, parents need to give approval for children under 12 to take part in research

Schools: Consent of children over 12 in secondary school is sufficient. Unless a different agreement with school authorities

Institutions: As above, unless a different agreement with institution authorities

Ethical approval: Ethical committees can be formed in different institutions.
Data Protection authority supervises compliance if use of personal data, must be notified, but only requires approval in certain exceptional cases ^[101]

Other Sources: ^[104]
 

• If processing of personal data parental consent is required only for children under 16 years, older children can consent themselves.


• Different code of ethics of professional organisations


• Some codes consider the consent of a child over 12 in secondary school as enough, with no need for parental consent


• Ethical committees are formed in different institutions
   

Context of legal framework and ethical codes of conduct: See sources ^[106], ^[109], ^[110], ^[111]

Age: Informed consent by parents for <13 ^[106]

Consent:  Non-obligatory No regulation on the need of written informed consent but written form is preferred

Role of children: for children >13 their approval is sufficient. Non-obligatory

Role of parents: Informed consent for children <13. Non-obligatory

Schools: Written permission form head teacher, parental consent is optional in such a protected environment (in practice parental consent is usually asked for children under 13) willingness of child to participate

Institutions: n/a

Ethical approval: Approval by institutional ethical committees is necessary for funding and publishing ^[108]

Other Sources: n/a

• Informed consent by parents for children <13 Informed consent of children >13


• Approval by institutional ethical committees is necessary for funding and publishing


• Research with children may be checked by Office of Commissioner for the Rights of the Child - upon individual request if there is a risk of child right violation. Non-obligatory professional ethical codes and good manners in science by Committee for Ethics should be followed


• Children > 13 suffering from mental illness or intellectual disability, limitations to be established by family court. Special safeguarding procedures for research with children with disabilities


• Note (Civil Code regulations): children who have not reached the age of 13 do not possess the capacity for legal acts. Children who have reached the age of 13 possess a limited capacity for legal acts. A person who has reached the age of 13 under certain circumstances (i.e. mental illness) may be completely incapacitated

Context of legal framework and ethical codes of conduct: Law of Data Protection ^[113]

Age: n/a

Consent:  Individual consent for sensitive data, no specific information about children.
Research tools have to consider best interest of the child, ensure clarity and adequacy according to age of child, anonymity ^[113] [114]

Role of children: Voluntary participation (ibidem)

Role of parents: Parental consent in a written form for children up to 18 (ibidem)

Schools: Obligatory - In case of sensitive data (see below) parents’ permission beforehand
Practice - Daphne project: school’s consent, parents’ written consent, students’ willingness ^[116] [117]
Questionnaires need to be authorised ^[116]

Institutions: n/a

Ethical approval: Obligatory formal declaration about research signed by study supervisor ^[118]

Other Sources: ^[119] [120] 

• Only obligatory regulations in the field of medical research and in school context: research by students needs to be approved


• No ethical codes of conduct referring to research practices, only taught in courses on research methods. As a good practice example, the Institute of Studies on Children from Minho University: conducts research with direct participation of children


• Practice: How children use internet in international study, ethical approval in the UK ^[119]


• Practice: Criteria for students participating in sheltering, educating, promoting training and social and professional integration of children at risk: preservation of anonymity, respect for privacy and other children rights ^[120] 
   

Context of legal framework and ethical codes of conduct: Law No.272/2004 on the protection and promotion of the child ^[121]; Article 42 of the Civil Code ^[122]; Regulations for the operation of the Ethics Commission of the Institute of Philosophy and Psychology ”Constantin Rădulescu Motru” ^[123]

Age: Two categories of child: <14 lack of legal capacity
Between 14 and 18 years old limited legal capacity ^[122]

Consent: Obligatory:Vary from an institution to another ^{[123] [124] [125] [126]}

Role of children: n/a

Role of parents: n/a

Schools: Example of project conducted by the ”Francisc I. Rainer” Institute for Anthropology of the Romanian Academy - Prior to starting the research, the school, the parents and the children are informed about the purpose and the methods of the research and the manner in which the collected data will be used, as well as the responsibilities and the rights of participants in the research. The participants’ oral and written consent is secured, a partnership agreement is concluded with the institution where the study is carried out, and the (progress or final) results are communicated to those involved.
In the course of sociological or educational research conducted in schools, depending on the research topic, the approval of the school Administration Board (Consiliul de Administrație) and of the parents must be sought so it is obligatory ^[124]

Institutions: Prior agreement of the local child protection services.
Entrance in the institution can be done only with the express approval of the director of the public service dealing with child rights protection and accompanied by a representative of this public service, the signature of a declaration that all data and information obtained will be used without affecting the image or right to privacy of the child placed in foster care, and taking and using of images of the children in foster care or custody may only be done with the prior consent of the parent of the child ^[128]

Ethical approval: No framework code of ethics for research but many institutions adopted their own codes of ethics. Approval of the ethics committee must be sought ^[125]

Other Sources: ^[120] [127] 

• No specific legal framework but the existence of many codes of conduct and practices that differ from one institute to the other makes the drawing of recommendations/conclusions difficult


• Basically the procedure depends on the research institute that conducts the research; in any case the approval of the relevant ethics committee is needed


• CNECSDTI (National Council for Ethics in Scientific Research, Technological Development and Innovation) has the mission to coordinate and monitor the application of good conduct norms in research and development activities in Romania; this institution is probably the one to contact before planning  research involving children


• Example for Ethical Approval: Research conducted by the Institute of Philosophy and Psychology “Constantin Rădulescu Motru" can start only after the approval of the ethics commission on the ethical aspects of the research and the forms of informed consent which are to be distributed to the subjects of the research and/or their parents/legal guardians in the case of research involving minors


• Code of Ethics and Professional Deontology for Research and Development Staff, Code of ethics and professional deontology of the personnel working in research and development and codes of ethics for each field of research are under preparation and may be adopted in near future (information provided in May 2011)

Context of legal framework and ethical codes of conduct: National Action Plan for Children 2009-2012; National Action Plan for Children 2013-2017 ^[129]

Ethical Code of Slovak Archive of Social Data; Civil Code; ESOMAR code of ethics ^[130]

Age: Children all up to the age of 18 ^[131]

Consent: n/a

Role of children: n/a

Role of parents: Practice - Internal regulations of informed consent of parent ^[132]

Schools: n/a

Institutions: n/a

Ethical approval: n/a

Other Sources: ^{[133] [134] [135] [136] [137]}
 

• Policies on increasing child participation in research but no regulations apart from medical research


• Ethical codes of conduct follow ESOMAR guidelines
   

Context of legal framework and ethical codes of conduct: Research and Development Act^[138], Personal Data Protection Act^[140], Patient Rights Act ^[141], Marriage and Family Relations Act ^[142], Code of Ethical Conduct and Expert Standards of Speech Therapists of Slovenia ^[143], Code of Professional Ethics of the Slovenian Sociological Association ^[144], ICC/ESOMAR International Code on Market and Social Research ^[146], National Medical Ethics Committee ^[139] , Helsinki Declaration, Oviedo Convention on Human Rights and Biomedicine and additional protocols, Slovene Code of Medical Deontology ^[150]

Age: < 15 Parental consent
> 15 Child consent (See Sources ^{[140],[141],[142],[143]}

Consent:  Obligatory. Maybe be written, oral or in some other appropriate manner ^[141]

Role of children: < 15: no legal capacity, if not otherwise stipulated by the law.
>15:  partial legal capacity ^{[140],[141],[142],[143]}

Role of parents: <15: parental consent is mandatory
>15: parents approval may be necessary in the specific cases depending of the nature of research and its impact on children ^[140],[143]

Schools: Personal data of pupils may be disseminated for the purpose of scientific research work and the preparation of statistical analyses in such a manner that the pupils concerned cannot be identified ^[151], ^[152],^[153]

Institutions: n/a

Ethical approval: The national medical ethics committee decides on the research proposals in the field of biomedicine as well as the research initiatives including people with mental health issues ^[139]

Other Sources: ^{[145] [147] [148] [149] [154] [155] [156]}

• Informed parental consent mandatory for chldren <15


• Parental approval may be necessary in some specific cases


• The national medical ethics committee is the only body in Slovenia with a clear legal mandate to assess the research proposals for their ethical acceptability. The committee decides on the research proposals in the field of biomedicine as well as the research initiatives including people with mental health issues


• Conditions to meet for scientific research involving individuals with mental health issues: written consent by person concerned as well as medical team; research plan to be approved by national medical ethics committee
   

Context of legal framework and ethical codes of conduct: Ley Orgánica 15/1999, de 13 de diciembre, de Protección de Datos de Carácter Personal ^[157] ; Code of psychologist ^[158] ; Law 41/2002, Royal decree 223/2004, Law 14/2007 ^[159]

Age: n/a

Consent: No regulations, only Codes of ethics of different professional organisations and international codes such as ESOMAR, ISA.

Role of children: No clarity, following international codes. Code of psychologist says parents need to be informed ^[158]

Role of parents: Practice - Parents not required consent in 2000 research from the Ombudsperson. Age groups covered were 12 to 16 years

Schools: n/a

Institutions: n/a

Ethical approval: Universities can have their own ethical committees. Network of committees under: http://www.ub.edu/rceue/ (however it relates mostly to medical experiments and research with animals) ^[160]

Other Sources: n/a

• Not regulated by law, except general rules on personal data protection applying to all data subjects


• Different codes of ethics of professional associations, but no determination of age or parental consent


• Practice also varies. Universities can have their own ethical committees

Context of legal framework and Eehical codes of conduct: Act concerning the Ethical Review of Research involving humans ^[161] ; Swedish Government, The Swedish Medical Products Agency; The Data Inspection Board

Age: Children between 15-18 years are in need of extensive protection, beyond making sure that they undertake activities freely and with awareness of possible adverse consequences ^[161]

Consent: Obligatory parental consent for children <15

Role of children: Children consent from 15 to 18. Assessment of the level of maturity and capacity for insight is needed ^[161] [163]

Role of parents: For children below 15: Parents must be informed and give consent
For children between 15 and 18: Child can consent but it depends on the level of maturity of the child. If the researcher’s assessment is that the minor is not mature enough and does not realise what the research entails and therefore cannot agree, the researcher must turn to the parents or guardians to ask for consent ^[161]

Schools: n/a

Institutions: n/a

Ethical approval: six regional ethics review boards (REPNs) that review research projects. Ethics review board should review a research project if any of the following conditions exist:
The project entails physical encroachment on the research subject
It will be conducted using a method aiming to affect the research subject physically or psychologically;
It carries an obvious risk of physical or psychological harm to the research subject
It entails studies on biological material that can be traced to specific individuals. ^[161]

Other Sources: ^[162]

• Parental consent for all children < 15


• >15: if the adolescent has adequate information about the research project to undertake activities freely and with awareness of possible adverse consequences, he/she can give consent to research without the parent’s authorisation. Children consent  15-18: assessment of the level of maturity and capacity for insight is needed


• No specific legislation on social research


• Ethics review board should review a research project if (inter alia) it is going to be conducted using a method aiming to affect the research subject physically or psychologically or it carries an obvious risk of physical or psychological harm to the research subject
   

Context of legal framework and ethical codes of conduct: Ethical guidelines published by the Medical Research Council (MRC) ^[164] , Framework for Research Ethics (FRE) published by the Economic and Social Research Council (ESRC) ^[170] ; Market Resarch Society (MRS) ^[171] ; United Kingdom (1969) Family Law Reform Act 1969, s 8(1) ^[166] ; United Kingdom (1991) Age of Legal Capacity (Scotland) Act 1991, s 1 (1) and s 2 (4) ^[168] ; United Kingdom (1995) Children (Scotland) Act 1995, s 6(1). ^[169]

Age: Child <18 (General legal principles)

Consent: <16 Parental consent
>16 "Gillick competent" children. Informed children consent.  ^[166]

Role of children: Child’s ability to give consent to medical treatment will depend on whether or not the child has achieved “sufficient understanding and intelligence to enable him or her to fully understand what is proposed". The emphasis placed on obtaining the informed consent of children wherever possible and, where not possible, at least securing their 'assent' to participation ^[164] [166]

Role of parents: see above

Schools: Good practice to seek additional consent from the child’s parents ^[171]

Institutions: n/a

Ethical approval: Researchers working with children are registered with the Independent Safeguarding Authority (ISA) and must have a clear Criminal Records Bureau (CRB). Research needs to be subject to appropriate ethics review, approval and monitoring.
Approval by ethics committees necessary, e.g. via University ethics committees ^[170] [171]

Other Sources: ^{[165] [167] [172] [173] [174] [175] [176]}

• The participation of children in fieldwork research, both clinical and non-clinical, is permitted in the UK


• For research outside the scope of the Clinical Trials Regulations, the legal framework governing consent to participate in research is based on the law governing a child’s capacity to consent to medical treatment


• Scotland has different legislation on age of consent


• The emphasis placed (at least outside the Clinical Trials Regulations) on obtaining the informed consent of children wherever possible and, where not possible, at least securing their 'assent' to participation


• The involvement of parents continues to be encouraged as a matter of good practice


• Internet research: Prior consent by children and their parents is necessary if information is collected from online forums and social networking sites. Telephone and online research projects: respondents must be asked to give their age before any other personal information is required. Any child under 16 must be excluded from the project until consent has been obtained from a responsible adult and verified (emails containing parental consent are not considered sufficient)