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Ethical considerations about observational research in children.

Observational research includes a subset of the broad range of benefits and risks in pediatric research. The exclusive, direct benefit of observational research is the generation of scientific knowledge. This benefit allows for easier communication with families by avoiding the misunderstanding that their child will directly benefit. However, pediatric research that does not offer a prospect of direct benefit can only have limited risks in accordance with the US regulations. The risks of observational research relate to any adverse effects from the disclosure of information from: 1) personally identifiable health information, 2) questionnaires and interviews about health related experiences and 3) data from biological samples for genetic and molecular studies. Whether these privacy and confidentiality risks exceed a "minor increase" over minimal risk, depends on the likelihood that confidentiality will be breached, the likelihood that the breach will result in harm, and the magnitude of the harm. Efforts like database encryption and linked codes can minimize these risks. These issues become more complicated when information has sufficient clinical value to warrant direct disclosure to the family. It is important to communicate basic information to parents about such risks when obtaining parental permission. Further, obtaining consent from adults who have participated in pediatric observational research shows respect for their participation and can facilitate trust. However, if such adults can not be located, when the research has sufficient social value, continual use of the data for ongoing analysis is appropriate.