Zeitschrift für pädiatrische Neurologie und Medizin

Ethical Pathways to Informed Consent When Collecting Information from Children in Research

Abstract

Ikani Samuel

Background: Informed consent is an ethical practice that should be guaranteed before a child is involved in a research. The position of the child in research has also become a subject of debate with regards to ethics. Though many countries may have unique provisions for conducting research with children, it is the goal of every regulatory mechanism to guarantee the autonomy, rights and protection of children in research.

Discussion: The form in which the information about a research is presented to a child can either weaken or strengthen the capacity of child to provide informed consent. The Medical Research Council suggests that many children would be competent to give consent if the information about the study is provided in an appropriate form and they are helped through the process of decision-making.

It is ethically unacceptable to exclude children with cognitive challenges or learning disabilities from research based on their condition. Any research with children should be designed to integrate children with these forms of condition, except it is vital to exclude them.

Even when the capacity of a child to provide informed consent is apparent, it is good ethical practice to involve the parents of the child in the decision making process especially for a research that carries any form of risk or discomfort. Notwithstanding this position, researchers always face challenges with obtaining active parental consent. Parental consent waiver is one of the options for dealing with the challenges associated with obtaining active parental consent. Most times parental waiver is a decision reached at recruitment points where a child with capacity to give informed consent insists that his or her parents should not be informed if he or she would participate in the research.

Summary: It is now clear that researchers must seek to position a child as one who can make informed choices. These emerging perspectives should support the selection of design, methodology and intervention for children with a goal to strengthen their capacity and autonomy to give informed consent.