Research Recruitment of Adult Survivors of Neonatal Infections: Is There a Role for Parental Consent?

Research on competent adult subjects does not require the consent of anyone beyond that of the adult subject. This case is complicated, however, because the targeted subjects were initially enrolled by their parents in a neonatal study and because the focus of the study, genital herpes simplex virus (HSV), carries significant stigma in the community. In considering the ethical issue of directly approaching the young adults for participation in this research, there are three key themes that need to be evaluated and considered: 1) the importance of the research for anticipatory guidance about the long-term impact of neonatal HSV; 2) the concerns of parents in disclosing the diagnosis; and 3) the interests of affected teens/young adults and their future partners.