title: Quality of life and myelomeningocele: an ethical and evidence-based analysis of the Groningen Protocol.
abstract: In 2005, a group of pediatricians at the University Medical Center in Groningen, The Netherlands, published the Groningen Protocol (GP) for Euthanasia in Newborns. This protocol is a set of guidelines devised in 2001 to clarify and facilitate the assessment of clinically stable neonates deemed to be in unbearable suffering for whom the prognosis is felt to be hopeless. At the time of publication, the GP had been in use for 7 years, and 22 patients, all with diagnosed myelomeningocele (MMC), had met the selection criteria for euthanasia by lethal injection. MMC is the most common neurological congenital anomaly, affecting approximately 300,000 newborns yearly worldwide. Neurosurgeons have a unique perspective on this disease and therefore an important voice, given the significant role they have in caring for these patients at all stages of their lives. This paper reviews the principal ethical arguments presented to date in the literature regarding the GP. It also provides an evidence-based critique of the GP in light of quality-of-life studies addressing adults with MMC, and ascertains whether or not the GP meets the criteria for an evidence-based guideline.
authors.affiliation: Center for Biomedical Ethics and Law, KU Leuven, Leuven, Belgium. spbarry@dal.ca
authors.forename: Sean
authors.initials: S
authors.lastname: Barry
mesh_terms: D028601:Euthanasia, Active / Q000941:ethics* / Q000379:methods; D019317:Evidence-Based Medicine / Q000941:ethics*; D006801:Humans; D007231:Infant, Newborn; D008591:Meningomyelocele; D009426:Netherlands; D010146:Pain / Q000517:prevention & control*; D011788:Quality of Life