The Preferences Instrument for Genomic Secondary Results (PIGSR) is a brief, validated tool to allow adults undergoing genomic testing to record their preferences about getting incidental or secondary results.
PIGSR is available for download under a Creative Commons Attribution-ShareAlike 4.0 International license.
Kyle Brothers, MD, PhD is an Assistant Professor in the Department of Pediatrics at the University of Louisville, where he is also affiliated with the Institute for Bioethics, Health Policy, and Law. Dr. Brothers’ research focuses on policy and ethics in human genetics research and the translation of genomic technologies into clinical care. His current work on PIGSR is funded by the National Human Genome Research Institute’s Clinical Sequencing Exploratory Research program. Dr. Brothers is a practicing pediatrician and experienced clinical ethicist. Dr. Brothers received his MD from the University Of Louisville School Of Medicine. He completed his residency training and chief residency in Pediatrics at Vanderbilt Children’s Hospital, and his PhD in Ethics and Society at Vanderbilt University.
Ellen Wright Clayton, MD, JD, is Craig-Weaver Professor of Pediatrics, Professor of Law, and Professor of Health Policy in the Center for Biomedical Ethics and Society at Vanderbilt University and Medical Center. She has long been involved in working to ensure the optimal conduct of genetics research and its incorporation into clinical care and has been happily collaborating with Dr. Brothers for several years. She is a member of the National Academy of Medicine and a Fellow of the American Academy for the Advancement of Science.
Carla Rich, MA is a Research Coordinator in the Kosair Charities Pediatric Clinical Research Unit in the Department of Pediatrics at the University of Louisville. As a graduate student, Ms. Rich worked with Susan E. Kelly, PhD on a two year NIH funded study which explored rural Kentucky families’ experiences in accessing healthcare and services for their children diagnosed with a genetic condition. More recently, she has collaborated on federally funded studies sponsored by the Kent School of Social Work at the University of Louisville as well as state and community funded studies sponsored by the Survey Research Center at the University of Louisville. Ms. Rich is experienced with in-depth personal interviewing and survey research methodologies—both by phone and in-person. Ms. Rich completed her Masters degree in Sociology at the University of Louisville where she happily took the lead in creating projects to fund student research.
