ETHICAL ISSUES IN RESEARCH WITH MINORS. ORIENTATION BY CODES AND MANY OPEN QUESTIONS

• Published in: Revista românǎ de bioeticǎ Vol. 11; no. 3
• Main Authors: Hiriscau, Ioana E, Stingelin-Giles, Nicola, Reiter-Theil, Stella
• Format: Journal Article
• Language: English
• Published: Isai Colegiul Medicilor Iasi 01-07-2013
• Subjects: Ethics; Medical research; Minors
• ISSN: 1583-5170; 2392-8034

Introduction. The health research involving minors creates specific ethical challenges such as obtaining the minor's consent or managing personal data. Research with minors investigating mental health and well-being determinants such as depression, sexual behaviour, alcohol consumption, drug use, raises special concern regarding the treatment of personal data provided by minors, especially by those minors considered to be competent to give consent for their participation. Objective. In this paper the authors aim to analyse the research ethics codes and guidelines with respect to confidentiality and minor's competency to assent or grant consent to participate in research. Additionally, the paper addresses the status quo in Romania regarding ethical guidance for research with minors. Method. A systematic literature search was carried out to identify the relevant international and European ethics codes and guidelines that cover a range of topics regarding confidentiality, consent and competence in health research involving minors. The selected documents will be analysed to reveal the aspects related to the above mentioned criteria. Results. The analysis highlights a substantial deficit regarding confidentiality for minors, provided that the competence of granting the consent is respected. The codes do not offer advice on the extent to which researchers should respect a promise of the confidentiality made to a minor, or in which circumstances breaching confidentiality might be justified. Conclusions. The findings suggest a need for explicit guidance on the ethics questions that arise in research regarding the principle of confidentiality and minor's consent in research.