title: Ethics of emerging technologies and their transition to accepted practice: intestinal transplant for short bowel syndrome.
abstract: Parental counseling becomes complex when considering the use of emerging technologies, especially if it is unclear whether the level of evidence is sufficient to transform the proposed therapy into accepted practice. This paper addresses ethical issues underlying medical decision-making and counseling in the setting of emerging treatments, when long-term outcomes are still in the process of being fully validated. We argue that the ethical transition of emerging technologies, ideally from ethically impermissible to permissible, to obligatory, depends primarily on two factors: outcome data (or prognosis) and treatment feasibility. To illustrate these points, we will use intestinal transplant for short bowel syndrome (SBS) as a specific example. After reviewing the data, this paper will identify the ethical justifications for both comfort care only and intestinal transplant in patients with ultra SBS, and argue that both are ethically permissible, but neither is obligatory. The approach outlined will not only be valuable as ultra SBS outcomes data continue to change, but will also be applicable to other novel therapies as they emerge in perinatal medicine.
authors.affiliation: Division of Neonatal-Perinatal Medicine, Yale University School of Medicine, New Haven, CT 06520-8064, USA. Christy.Cummings@yale.edu
authors.forename: C L
authors.initials: CL
authors.lastname: Cummings
authors.forename: M R
authors.initials: MR
authors.lastname: Mercurio
mesh_terms: D000328:Adult; D020811:Biomedical Technology / Q000941:ethics*; D003376:Counseling; D003657:Decision Making; D004992:Ethics, Medical; D006801:Humans; D007231:Infant, Newborn; D007258:Informed Consent; D007421:Intestine, Small / Q000637:transplantation*; D016377:Organ Transplantation / Q000941:ethics*; D010166:Palliative Care; D010290:Parents; D011379:Prognosis; D012778:Short Bowel Syndrome / Q000601:surgery*; D016896:Treatment Outcome