Barnes Jewish Hospital and University of Texas Southwestern Medical Center
The human genome project is advancing the field of medical diagnosis and treatment.  The practice of genetic diagnostics requires ongoing research with patients in a variety of clinical settings, including intensive care units (ICU).  Given that ICU patients are often incapable of making decisions on their own, the decision making process is passed on to their surrogate decision maker.  A variety of legal and ethical question emerge when these surrogates are asked to enroll their incapacitated love ones into genetics-based medical research.  Maroon Society collaborated with Barnes Jewish Hospital, Children’s Hospital Los Angeles, and the University of Texas Southwestern Medical Center in a multi-year study that took place in St. Louis and Dallas.  This in-depth research highlighted how difficult it is for surrogates to distinguish the difference between research and treatment.  In order to advance medicine, we developed recommendations for ICU-based genetic research, specifying the need to ensure that surrogates fully understand the consent process, and recognize that research provides no therapeutic benefit to patients.