What are the limits of informed consent?

[ By on January 03, 2016 ]

Imagine the anticipation of becoming a new parent.  You are probably 2/3 of the way through a pregnancy (or your partner is).  You’ve begun to set up the baby’s room, washed a few items of clothing so you’ll be prepared when the baby is born.  You have thought about names and parental leave from work.  Then, unexpectedly and problematically, your baby is born prematurely.  You trust the doctors who are trying to keep your newborn alive, but certainly have feelings of worry that this little one will not survive being outside the womb so early.  During this time, one of the physicians invites you to participate in a study to determine the optimal oxygen levels to deliver to premature infants.  Do you participate or not?  Can a new parent, one of whom just delivered this infant, fully assess the benefits and risks for their child to participate in such a study?  Is informed consent possible in this situation?

At times, I think that questioning whether new parents can give informed consent about studies like this (or about others that may be more directly linked to saving the life of their child) is paternalistic.  Of course, a mother or father can think through what is best for their child and come to a reasoned conclusion.  But, I think back to those early days with my not-premature children.  They seemed so fragile.  I felt so emotional and unprepared.  I think that giving informed consent in the neonatal period is far more complicated than typical parental consent and would suggest setting up systems to ensure parents can be their most rational and thoughtful selves.  Perhaps a model similar to what adoptive parents use makes sense.

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