MacLean Center for Clinical Medical Ethics

My main research interest focuses on genetic testing and screening for intellectual disability (ID) such as mental retardation. Taking Fragile X as a model condition, we investigate the ethics and policy implications of testing for ID under various circumstances across the lifespan: in the newborn period as part of population screening, in childhood as part of symptomatic testing and in the adult onset Parkinson-like syndrome and premature ovarian failure.

Another area of research interest is health care transitions of individuals with ID from pediatric health care to internal medicine. We are currently working on a project studying internists’ attitudes towards caring for adults with ID and the impact of an ID diagnosis on clinical practice and the decision making process in the doctor-patient relationship

My main areas of interest are in organ donation and pediatric palliative care. I currently serve on the National Collaborative for Organ Donation. I also am deeply involved in the medical student research program for all student-projects on ethics.

Parental perspectives on organ donation. We performed 70 surveys with parents in the Pediatric Intensive Care Unit about their attitudes to organ donation after brain death and donation after cardiac death. This project is currently under manuscript preparation.

Pediatric Palliative Care: We performed semi-structured interviews of parents about their attitudes towards withdrawing life support on children in the pediatric intensive care unit. The interviews are complete and in review (or already published). Collaborator: Kelly Michaelson, MD, MPH (Assistant Professor, Children Memorial Hospital).

My research focuses on the interface between medical epidemiology and ethics. Specifically, I am interested in the ability, or inability, of neonatologists to predict the outcomes of extremely premature infants WHILE THEY ARE STILL ON MECHANICAL VENTILATION, that is, while there is still some alternative to continuing NICU intervention (extubating the baby and letting him die). We have developed several metrics of both intuitions and algorithms and are investigating the relative predictive power of each.

In addition, we are attempting to describe the financial/economic impact of various NICU interventions for infants of various gestational ages/illness severity.

The main focus of my research is an analytical examination of moral relationships and their implications for health care decision making. I have always focused on three distinct areas: 1) pediatric ethics; 2) transplantation ethics and policy; and 3) genetic ethics. My current research in these 3 areas examine the issues of vulnerability and vulnerable populations within each of these fields and the normative implications of health care policies.

Ethical and Policy Issues raised by Organ Transplantation. The main focus of my work is on living donor issues. However, my current project seeks to determine a more equitable allocation of deceased donor organs. Collaborators: J. Richard Thistlethwaite, Jr (transplant surgeon, University of Chicago) and Stefanos Zenios (Stanford Graduate School of Business).

A second transplant project involves writing a statement for the American Academy of Pediatrics on the role of children as organ donors. (Collaborators: J. Richard Thistlethwaite, Jr (transplant surgeon) and the American Academy of Pediatrics, Committee on Bioethics).

A third transplant project involves an empirical examination of the attitudes of physicians about children as organ donors, particularly the role of identical twins as donors. (Collaborators: J. Richard Thistlethwaite, Jr (transplant surgeon), Michele Josephson MD (nephrologist) and Josh Joseph (recent college grad).

I am currently funded by the National Library of Medicine to write a book on ethical and policy issues in living donor transplantation.

Ethical and Social Issues in Sickle Cell Disease: I am currently working on a research project on sickle cell carriers and their understanding of sickle cell disease and carrier status, and their attitudes towards disclosure. The main purpose for undertaking this project is to understand the meaning of carrier status in a condition that mainly affects African Americans. Although the gene was discovered by Linus Pauling in 1949, historically there has much confusion about sickle cell disease versus sickle cell trait and not much work done to show whether the confusion has been resolved. In contrast, there is much work currently being done to understand carrier status in cystic fibrosis despite the fact that the gene was only discovered 15 years ago. This project is funded by the Illinois Department of Public Health. Collaborators include Kruti Acharya (Developmental and Behavioral Pediatrics) and Milda Saunders (4th year med/peds resident).

Ethical and Social issues in expanding newborn screening. I am currently working with Michael Msall to think about the issue of expanding newborn screening to lysosomal storage diseases. This is not a hypothetical project as a bill is currently on the governor’s desk.

My research interests are narrative medicine and the use of poetry and reflective writing in medical education, developmental screening in children with special health care needs, primary care of autism spectrum disorder and ethical cultural and disability issues related to child abuse and neglect.

Currently, I am working on survival curves for extremely low birth weight (ELBW) babies using a national data set. Although this project is focused on the Epidemiology, there are serious ethical impolications. To-date, we have presented different parts of the analysis at the Society of Pediatric Research and are now trying to prepare for publication.

A second project that I am undertaking is a survey of level 3 neonatologists and pediatric surgeons about their management practices in babies with Congenital Diaphragmatic Hernia.

Finding the Family’s Perspective Regarding the Inpatient Care of Individuals with Serious Mental Retardation - The goal of this project is to examine and document the perspectives of primary caregivers of individuals with serious mental retardation regarding their child’s inpatient care. Five semi-structured, in-depth interviews were recorded of parents of children with serious mental retardation on the day of their discharge from an inpatient hospitalization. Manuscript now in the process of publication.

Pediatric Residents’ Perceptions of Issues of Developmental and Social-Emotional Health Before and After an Educational Intervention - Co-investigator: Saur Baur, M.D. (current PL3, will be Chief Resident of Pediatrics AND DBP fellow starting on 1 July 2007) - The goal of this project is to determine whether a standardized educational intervention (see http://www.edopc.org/) can be objectively documented to have a positive impact on the knowledge of pediatric residents who are exposed to it. Pre- and post-test surveys of the pediatrics residents at the University of Chicago have been completed and have been analyzed. These data were presented at the 2007 PAS meetings and are now in the process of publication.

Illinois Medical Home Project – Through my work at the Friend Family Health Center (FFHC), a Federally Qualified Health Center, I am participating in a quality improvement project through the Illinois Chapter of the American Academy of Pediatrics (ICAAP) to try to improve the quality of care to children and youth with special healthcare needs (CYSHCN) that come to FFHC. The goal of the project is to develop an effective Quality Improvement program at FFHC. As part of the project, staff and family members of children served at FFHC will be attending learning sessions, receiving training material, assembling a quality improvement team, and participating in quality improvement activities to help make our services better for patients. Pre and post surveys (including the Medical Home Index, see http://www.medicalhomeimprovement.org/outcomes.htm) of families and staff will be used to measure changes in the areas of care quality and care coordination. The second year has just begun, and, as directed by family participants, we will be creating a CME program for local Chicago pediatricians regarding the “Medical Home: From Theory to Practice” in the Spring of 2008.

University of Chicago Pediatric Residency “Firms Implementation Impact” Project: The University of Chicago pediatric residency implemented a new system of organization for its inpatient rotations on 1 July, 2007. This project is a series of surveys of residents, fellows, and attendings regarding the impact that this change will have on both clinical care and teaching. The first, baseline survey has been completed and the first, 6-month follow-up survey will be completed in December, 2007.

My research focuses on pediatric injury prevention- specifically, pediatric pedestrian-motor vehicle crashes. Pediatric pedestrian injuries remain a major cause of childhood hospitalization, disability, and death. There were 3,521 children admitted to the University of Chicago Medical Center for traumatic injuries from 2002-2009; 27.7% (974) of these children sustained injuries in pedestrian motor vehicle injuries. From 2002-2009, there were a total of 106 traumatic deaths; 29 due to pedestrian motor vehicle crashes (27.4%). Racial disparities have been noted in the rates of pediatric pedestrian injury and death. In order to target injury prevention efforts, it is imperative to identify those children at risk. Disparities in pediatric pedestrian-motor vehicle crash rates are currently being assessed utilizing spatial analysis of geographic information systems (GIS). In order to target injury prevention strategies, spatial analysis will be used to identify associations between pediatric pedestrian-motor vehicle crash sites and the demographic features of the neighborhoods served by our pediatric trauma center.