Ethical Ambiguities in Applied Research

This essay aims to explore some of the main ethical issues that arise in research involving children. After introducing basic concepts and definitions, the essay evolves around the importance of distinguishing between the needs and rights of children and adults as well as recognizing the fact that children should not be dealt as objects of protection but as subjects of rights, as active social actors. This constitutes one of the first and foremost ethical challenges in research involving children. In addition, the essay investigates the fundamentals of ethics, how ethics can be promoted and justified in research involving children while embarking on a more detailed account of ethical issues before, during and after research such as informed consent, power relations, and confidentiality. The last part suggests and recommends a new methodological approach to research involving children based on the scientific shift from research on children to research with or by children. To conclude, the essay insists on reflecting on the importance for children to remain at the centre of consideration and re-conceptualize children within the social sciences as active agents rather than as the objects of research

Jigjiga University, 2022

ABSTRACT Major components of Ethical Considerations in Research Involving children are discussed in this paper. The general objective of this paper is to explain the potential ethical issues that you will take into consideration in conducting a research that involves children and also explain how you will ensure adherence to the ethical issues in the research. Children’s rights are defined in various ways, covering a broad spectrum of civil, cultural, economic, social and political rights. Synoptically and according to Child Rights convention, the rights could also be categorized as the right of empowerment. Research in children has based its ethical guidance around some of the following principles: such as Research involving children is important for the benefit of all children and should be supported, encouraged and conducted in an ethical manner, Children are not small adults; they have an additional, unique set of interests. Research should only be done on children if comparable research on adults could not answer the same question. And a research procedure, which is not intended directly to benefit the child subject, is not necessarily either unethical or illegal. In every case informed consent must be obtained from the child’s legal representative and the child’s assent should be obtained through the provision of age-appropriate information. While the child participating in the research has been assured that his/her answers will not be revealed. In such situations the researcher has to achieve “a balance between the parent’s right to know and the child’s right to privacy”. Besides that Plagiarism is an important topic in academic institutions of higher learning. This is the practice where an author or researcher has to ensure that any work which is written should be original and be devoid of some texts, results or even expressions which are borrowed, without acknowledging the author. These issues are major ethical components which are needed to give consideration while conducting research involving children.

Medical Journal of Australia, 2004

Archives of Disease in Childhood, 2005

Aims: To assess parental understanding and memorisation of the information given when seeking for consent to their child's participation to clinical research, and to identify the factors of significant influence on parents' decision making process. Methods: Sixty eight parents who had been approached for enrolling their child in a clinical oncology or HIV study were asked to complete an interview. Their understanding was measured by a score which included items required to obtain a valid consent according to French legislation. Results: Items that were best understood by parents were the aims of the study (75%), the risks (70%), the potential benefits to their child (83%), the potential benefits to other children (70%), the right to withdraw (73%), and voluntariness (84%). Items that were least understood were the procedures (44%), the possibility of alternative treatments (53%), and the duration of participation (39%). Less than 10% of the parents had understood all these points. Ten parents (15%) did not remember that they had signed up for a research protocol. Thirty three parents (48%) reported no difficulty in making their decision. Twenty four parents (38%) declared that they made their decision together with the investigator; 26 (41%) let the physician decide. Fifty four parents (78%) felt that the level of information given was satisfactory. Conclusion: There was an apparent discrepancy between parents' evaluation of the adequacy of the information delivered and evaluation of their understanding and memorisation. The majority of parents preferred that the physician take as much responsibility as possible in the decision making process.

This paper examines the rights of children as participants in university-based research projects. Human Ethics Committee policies from the eight New Zealand universities are compared to identify and address issues associated with the collection of informed consent, that is, when should researchers obtain parental or guardian consent before children can participate in a research project, and when is a child considered an adult. There are a number of issues that arise when dealing with children in research, particularly in disciplines such as medicine, where, for example, a guardian under certain circumstances can override a child's refusal. Whilst briefly discussing the medical discipline, the primary focus is on research undertaken in social sciences/humanities. To define 'participation' this paper draws on the work of Hart (1992, p.5) where participation is understood to refer to "the process of sharing decisions which affect one's life…". The decision...

European Child & Adolescent Psychiatry, 2014

Conducting prevention research with children and adolescents raises ethical challenges especially regarding confidentiality. Research with children and adolescents often applies methodologies which aims at the disclosure of sensitive information about practices that impact on adolescent mental and physical health such as sexual activity, smoking, alcohol consumption, illegal drug use, self-damaging and suicidal behaviour (ideation and attempts). The scope of the article is to review normative documents that cover topics relevant for confidentiality when conducting research with children and adolescents. A systematic literature search in MEDLINE was performed to identify relevant international and European guidelines and codes of ethics that cover health, behavioural and social science research. Additionally, the European Research Ethics website was consulted for double check. However, none of the documents aimed at biomedical, behavioural or social research offers concrete support in resolving practical research ethics problems regarding confidentiality. The codes show a lack of clarity in any circumstances in which the researcher might have an obligation to breach confidentiality by disclosing sensitive information. Only little information is given on what kind of disclosed information, if disclosed, might justify breaching confidentiality. The findings prove a need for normative documents to address the ethical questions regarding confidentiality arising in research practice explicitly and specifically. Moreover, further forms of ethical guidance should be developed to support ethical research with children and adolescents.

Journal of Adolescent Health, 2017

Pediatric Anesthesia, 2002

Background: Disclosure is a key element of the informed consent process. This study examines and compares the priorities for disclosure of the elements of informed consent between parents of paediatric research subjects and investigators. Methods: The study sample comprised 184 parents who had been approached for permission to allow their child to participate in a clinical anaesthesia or surgery study. Parents were asked to rank 11 elements of informed consent that they believed were most important for them to know before allowing their child to participate in a research study. In addition, 38 investigators were asked to rank, in order of importance, the same elements that they felt were most important for parents to know. Results: The results showed that risk was the most important element considered by both parents and investigators. However, parents placed significantly greater importance on knowledge of the potential benefits to their child (direct) and to other children (indirect) compared with investigators, and less importance on the details of the protocol and the element of voluntariness. Conclusions: These results demonstrated differences in the priorities for disclosure of the elements of consent between parents and investigators. As such, they may be important in directing the investigator to focus on the elements that are most important to parents and thus maximize their ability to provide truly informed consent.

The Medical journal of Australia

In 2007, the National Health and Medical Research Council (NHMRC) released a revised National statement on ethical conduct in human research. Public submissions in the review process leading to the 2007 statement highlighted four main areas of concern: children's competence to consent, mature minors and the requirement for parental consent, whether children can refuse to participate, and the provision of information to children. A useful addition to the statement is the concept of levels of maturity, which help determine whether a child or young person's consent is necessary and/or sufficient for participation in research. Changes in terminology ("capacity" instead of "competence" and introduction of the term "vulnerability") have the potential to create confusion, as the new terms are not clearly defined, and capacity is used in several senses.