title: Research with newborn participants: doing the right research and doing it right.
abstract: Research ethics encompass debate about what research topics matter, for example in relation to social values and individual needs, and debate about how to conduct research in an ethical manner, for example in relation to protecting the rights of vulnerable research participants. Research in the neonatal intensive care unit (NICU), where critically ill infants receive expensive and often invasive treatment, raises unique issues with regard to what research should be conducted and how to conduct it in an ethical manner. This discussion addresses the neonatal nurse's role in setting the research agenda in neonatal care-influencing what topics are researched and serving as lead investigators on studies, and highlights their role in ensuring that research is conducted correctly-protecting the rights of infant participants and their families. The involvement of neonatal nurses in research ethics has been a valuable contribution to the development of the field. A greater level of involvement is now needed, particularly at the policy level where funding and procedural issues are decided. New approaches are also needed and could involve more direct collaboration between nurses and parents.
authors.affiliation: Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust, London. l.franck@ich.ucl.ac.uk
authors.forename: Linda S
authors.initials: LS
authors.lastname: Franck
mesh_terms: D002651:Child Advocacy / Q000941:ethics / Q000331:legislation & jurisprudence; D003142:Communication; D004993:Ethics, Nursing; D032984:Ethics, Research; D006801:Humans; D007231:Infant, Newborn; D007258:Informed Consent / Q000941:ethics; D015931:Intensive Care, Neonatal / Q000941:ethics / Q000458:organization & administration* / Q000523:psychology; D017283:Neonatal Nursing / Q000941:ethics / Q000458:organization & administration*; D024802:Nurse's Role / Q000523:psychology; D015399:Nursing Research / Q000941:ethics / Q000458:organization & administration*; D033282:Parental Consent / Q000941:ethics / Q000331:legislation & jurisprudence; D010290:Parents / Q000193:education / Q000523:psychology; D011368:Professional-Family Relations / Q000941:ethics; D012107:Research Design / Q000331:legislation & jurisprudence / Q000592:standards; D035842:Research Subjects / Q000331:legislation & jurisprudence; D036302:Therapeutic Human Experimentation / Q000941:ethics / Q000331:legislation & jurisprudence; D014481:United States