Institutions:(1) Divisions of Neurosurgery, (2) Nephrology and (3) Neonatology, (4) and the Children's Mercy Bioethics Center4 Children's Mercy Kansas City Kansas City, MO All authors have no relevant disclosures.
Introduction:Informed consent is a pillar of modern bioethics and is supported by numerous ethical principles, including beneficence, respect for persons and personal autonomy. It is also now a legal requirement for most research and medical care. Its elements include that the patient understands the risks/benefits, that "relevant" information has been disclosed to the patient and that the patient has the ability to make a voluntary decision to proceed.
Methods:The advent of maternal-fetal medicine has presented unique challenges, starting with the notion of two patients. Furthermore, much of the care offered is at the leading edge of innovation. The impact on informed consent is broad, including uneven distribution of risks, tangible benefit for one patient only, fetal benefit being highest in lethal conditions, the fetus cannot consent and has poorly defined rights (up until delivery) and the father's rights remain unclear.
Results:The process of fetal repair of myelomeningocele has passed through the stages of innovation/experiment, research and ultimately to "standard of care" in <25 years. As a non-lethal condition, the risk/benefit approach is much harder to define, particularly as the risks can evolve with the growth of the procedure. It is proposed that the development of the procedures must be based on the hope of reducing disability, with consent being based on the principles of autonomy and beneficence for the mother, but on the beneficence principle only for the baby.
Conclusion:An example of a less than ideal informed consent will be presented, and the historical lessons learned from the development of caesarian section will also be reviewed.