University of Chicago
Lainie Friedman Ross, MD, PhD is the Carolyn and Matthew Bucksbaum Professor of Clinical Ethics, Professor, Departments of Pediatrics, Medicine, Surgery and The College, Associate Director of the MacLean Center for Clinical Medical Ethics and co-Director of the Institute for Translational Medicine, University of Chicago. Dr. Ross has published two books on pediatric ethics: Children, Families and Health Care Decision Making (Oxford University Press, 1998) and Children in Medical Research: Access versus Protection (Oxford University Press, 2006) and has co-authored three books, two with Robert M Veatch (Transplantation Ethics, 2nd edition, Georgetown University Press, 2015; and Defining Death: The Case for Choice, Georgetown University Press, 2016) and one with Dick Thistlethwaite (The Living Organ Donor as Patient: Theory and Practice, Oxford University Press, 2021).
Dr. Ross earned her AB from the School of Public and International Affairs at Princeton University (1982); an MD from the University of Pennsylvania School of Medicine (1986) and a PhD in philosophy from Yale University (1996). She did her pediatric residency at the Children’s Hospital of Philadelphia (1986-1988) and at Columbia University (1988-1989).
Dr. Ross' research has focused on ethics and policy in pediatrics, genetics and genomics, transplantation and research ethics. In the evolving field of genetics and genomics, most of her attention has focused on newborn screening since it is the most frequently ordered genetic test (capturing virtually all infants born in the US). Parent and professional advocacy groups have been instrumental in expanding the number of conditions included in the newborn screening panel. The result is that some conditions now included do not meet population screening criteria (the so-called Wilson and Jungner criteria [WHO, 1968]). In response, she has argued to “proceed with caution”. We do not know much about how families will react to abnormal genetic screens, even if follow-up studies are normal, or if the condition is mild. Often, we do not know whether the therapies we offer are necessary or effective, in part, because we do not know how many children with these conditions would have remained asymptomatic or done well regardless, particularly for conditions that do not express in the newborn period. Finally, while newborn screen as a public health program, should improve health equity, she have argued that the methodologies used may exacerbate disparities. Other controversies arise beyond the newborn period. Dr. Ross was the lead author of the joint American Academy of Pediatrics, American College of Medical Genetics and Genomics (ACMG) statements on genetic testing and screening of children (policy statement published in Pediatrics and Technical Report published in Genetics in Medicine). She have also been actively engaged in the debate about the return of secondary findings from whole genome and whole exome sequencing.
Dr. Ross was a 2014 recipient of a John Simon Guggenheim Memorial Foundation Fellowship and the 2015 recipient of the William Bartholomew Award in Ethical Excellence from the American Academy of Pediatrics.
Thursday, November 3, 2022
7:30 AM – 9:30 AM ET