Profile

Benjamin S. Wilfond, MD

On staff since July 2006

Children's Title: Director, Treuman Katz Center for Pediatric Bioethics

Academic Title: Professor and Chief, Division of Bioethics; Professor, Pulmonary and Sleep Medicine, Department of Pediatrics; Adjunct Professor, Department of Bioethics and Humanities, University of Washington School of Medicine

Research Center: Center for Clinical and Translational Research

"All doctors struggle with complex ethical issues, but I get the chance to talk with families and my colleagues to explore different perspectives and to think about those complex issues year after year. I love to share what I am learning, and I hope it helps us all make our journey in healthcare and in life more fulfilling."

Benjamin S. Wilfond, MD, is the director of the Treuman Katz Center for Pediatric Bioethics at Seattle Childrens Hospital and professor and chief of the Division of Bioethics in the Department of Pediatrics at the University of Washington School of Medicine. He is also adjunct professor in the Department of Bioethics and Humanities.

Dr. Wilfond is the chief of the Bioethics Consultation Service and attends in the Chest Clinic in the Division of Pulmonary Medicine. He is co-director of the Regulatory Support and Bioethics Core for the Institute of Translational Health Sciences and coordinates the ITHS Research Bioethics Consult Service. He earned his MD from the University of Medicine and Dentistry of New Jersey New Jersey Medical School. He completed his pediatric residency and his fellowship in pediatric pulmonology and medical ethics at the University of Wisconsin. He has held faculty appointments at the University of Arizona, National Institutes of Health and Johns Hopkins University.

He conducts research on ethical and policy issues related to genetic testing, genetic research and pediatrics research. He has recently worked on issues related to newborn screening, disclosure of genetic research results and pediatric biobanks. He is the president of the Association of Bioethics Program directors, the chair for the Clinical Research Ethics Consultation Working Group for Clinical and Translational Science Awards program, and an member of the Bioethics and Legal Working Group of the Newborn Screening Translational Research Network.

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Overview
Publications
Presentations
Research Funding

Overview

Board Certification(s): Pediatrics
Pediatric Pulmonology
Medical/Professional School: University of Medicine and Dentistry of New Jersey, Newark
Residency: Pediatrics, University of Wisconsin Hospital and Clinics, Madison
Fellowship: Pediatric Pulmonology, University of Wisconsin Hospital and Clinics, Madison
Clinical Interests: As a pulmonologist, I currently focus on children with chronic lung diseases related to prematurity. I also have a particular interest in caring for children with lung problems related to complications of developmental disabilities. As medical ethicist, I focus on issues related to parental decision making for clinical care and the use of genetics technologies in both clinical care and research.
Research Description: I conduct research on ethical and policy issues related to genetic testing, genetic research and pediatrics research. I have recently worked on issues related to newborn screening, disclosure of genetic research results, pediatric biobanks, and children with disabilities. I have a particular interest in understanding the role of research ethics consultation in improving the quality of research.
Research Focus Area: Bioethics

Publications

The OHRP and SUPPORT
The New England journal of medicine , June 5, 2013

Examining Palliative Care Team Involvement in Automatic Consultations for Children on Extracorporeal Life Support in the Pediatric Intensive Care Unit
J Palliat Med , May 13, 2013: 16(5)492-95

Fuzzy Images: Ethical Implications of Using Routine Neuroimaging in Premature Neonates to Predict Neurologic Outcomes
J Pediatr , April 26, 2013

Obstructive Sleep Apnea in a 17-Year-Old With Profound Cognitive Impairment
Pediatrics , Feb. 2013: 131(3)581-5

Role for CTSAs in Leveraging a Distributed Research Infrastructure to Engage Diverse Stakeholders in Emergent Research Policy Development
Clin Transl Sci , Feb. 2013: 6(1)57-9

The Establishment of Research Ethics Consultation Services (RECS): An Emerging Research Resource
Clin Transl Sci , Feb. 2013: 6(1)40-4

Li-Fraumeni Syndrome: Report of a Clinical Research Workshop and Creation of a Research Consortium
Cancer Genet , Oct. 2012: 205(10)479-87

Recommendations for ethical approaches to genotype-driven research recruitment.
Human genetics , Sept. 2012: 131(9)1423-31

The experience of families with children with trisomy 13 and 18 in social networks.
Pediatrics , Aug. 2012: 130(2)293-8

Predicting our future: lessons from Winnie-the-Pooh.
The Hastings Center report , July 2012: 42(4)3

Engaging children in genomics research: decoding the meaning of assent in research.
Genetics in medicine : official journal of the American College of Medical Genetics , April 2012: 14(4)437-43

Managing incidental findings and research results in genomic research involving biobanks and archived data sets.
Genetics in medicine : official journal of the American College of Medical Genetics , April 2012: 14(4)361-84

Research participants' perspectives on genotype-driven research recruitment.
Journal of empirical research on human research ethics : JERHRE , Dec. 2011: 6(4)3-20

Parent perspectives on pediatric genetic research and implications for genotype-driven research recruitment.
Journal of empirical research on human research ethics : JERHRE , Dec. 2011: 6(4)41-52

Commentary: Children and predictive genomic testing: disease prevention, research protection, and our future.
Journal of pediatric psychology , Nov. 2011: 36(10)1113-21

Parental Requests for Interventions in Children With Lethal Conditions in Clinical Ethics in Pediatrics: A Case Based Textbook
Cambridge University Press , Oct. 2011: 174-180

Response to the Commentary: Children and Predictive Genomic Testing
J Pediatr Psychol , Sept. 9, 2011: 36(10)1128-9

The Power of Knowledge: How Carrier and Prenatal Screening Altered the Clinical Goals of Genetic Testing in Achieving Justice in Genome Translation: Rethinking the Pathway to Benefit
Oxford University Press , Sept. 2011

Population Carrier Screening: Psychological Impact
Wiley & Sons , July 15, 2011: eLS

Parents' attitudes toward pediatric genetic testing for common disease risk.
Pediatrics , May 2011: 127(5)e1288-95

Research use of leftover newborn bloodspots: attitudes of Canadian geneticists regarding storage and informed consent requirements.
Genetics in medicine : official journal of the American College of Medical Genetics , April 2011: 13(4)305-13

Growth Attenuation: Health Outcomes and Social Services
Hastings Center Report , 2011: 41(5)7-8

Patient Perspectives on Group Benefits and Harms in Genetic Research
Public Health Genomics , 2011: 14(3)135-42

A randomized trial of genetic and environmental risk assessment (GERA) for colorectal cancer risk in primary care: trial design and baseline findings.
Contemporary clinical trials , Jan. 2011: 32(1)25-31

Presentations

Presentations Title	Event	Location	Date
Social work and Bioethics: A Call For Collaboration	American Society of Bioethics and Humanities Annual Meeting	Washington, DC	Oct. 19, 2012
Research Ethics Consultation: Common Challenges and Tailored Approaches	American Society of Bioethics and Humanities Annual Meeting	Washington, DC	Oct. 19, 2012
What Are the Psychosocial and Ethical Implications Associated with Sapropterin Response or non-response?	Phenylketonuria Scientific Review Conference: State of the Science and Future Research Needs	Bethesda, MD	Feb. 2, 2012
Transforming Clinical, Parental, and Society Discord About Disability: the Example of Trisomy 18 and 13	American Society of Bioethics and Humanities Annual Meeting	Minneapolis, MN	Oct. 13, 2011
What Does it mean to Get Assent From Children in Pediatric Biobank Genomic Research	Pediatric Academic Society Meeting	Denver, CO	May 3, 2011

Research Funding

Grant Title	Grantor	Amount	Award Date
Pilot Demonstration Project for Carrier Testing Using NGS	NIH/NHGRI (UO1)	$342,690.00	June 15, 2013
Institute of Translational Health Sciences	NIH/NCATS	$7,667,311.00	June 1, 2012
Research Ethics Consultation: Stateof the Art	VHA National Center for Ethics in Health Care	$19,172.00	Jan. 2, 2012
Bioethics Consultation Standardization and Data Sharing	NIH/NCRR	$428,712.00	Sept. 11, 2010
Center for Genomics and Healthcare Equity	NIH/NHGRI	$185,246.00	May 14, 2010
Ethical Approaches to Genotype-Driven Research Recruitment	NHGRI	$850,201.00	Sept. 30, 2009
Parental Permission and the Adolescent Assent Process	NIH Clinical Center Department of Bioethics	$29,000.00	March 24, 2009

Primary Office

Seattle Children's Research Institute

C9S - 6 - Clinical and Translational Research
1900 - 9th Ave Bldg 1

Seattle, WA 98101

206-844-8355

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Benjamin S. Wilfond, MD

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