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Benjamin S. Wilfond, MD

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Benjamin S. Wilfond, MD

Bioethics, Pulmonary and Sleep Medicine

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."

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

Phenylketonuria Scientific Review Conference: State of the Science and Future Research Needs
Molecular Genetics and Metabolism , June 2014: 112(2)87-122
Assent in Research: the Voices of Adolescents
J Adolescent Medicine , May 2014: 54(5)515-20
The Ethics of Disclosing to Research Subjects the Availability of Off-Label Marketed Drugs
The American Journal of Bioethics , April 14, 2014: 14(4)51
Ethics of Continuing to Provide a Drug on an Open-Label Extension Study for an "Unapproved Indication"
American Journal of Bioethics , April 14, 2014: 14(4)56
Accepting Brain Death
N Engl J Med , March 6, 2014: 370891-94
Our Children Are Not a Diagnosis: The Experience of Parents Who Continue Their Pregnancy After a Prenatal Diagnosis of Trisomy 13 or 18
Am J Med Genet A , Feb. 2014: 164(2)308-18
Parental permission for pilot newborn screening research: guidelines from the NBSTRN
Pediatrics , Feb. 2014: 133(2)e410-7
Tracheostomies and Assisted Ventilation in Children with Profound Disabilities: Navigating Family and Professional Values
Pediatrics , Feb. 2014: 133(Supplement)S44-S49
Quality Improvement Ethics: Lessons From the SUPPORT Study
Am J Bioeth , Dec. 2013: 13(12)14-19
Oxygen and Estrogen
Hastings Center Report , Nov. 2013: 43(6)
Managing disclosure of research misconduct by a graduate student to a university mental health professional during a clinical counseling session
Am J Bioeth , Oct. 2013: 13(10)68
The ethics of contacting family members of a subject in a genetic research study to return results for an autosomal dominant syndrome
Am J Bioeth , Oct. 2013: 13(10)61
Challenging Cases in Research Ethics
Am J Bioeth , Oct. 2013: 13(10)60
Fuzzy Images: Ethical Implications of Using Routine Neuroimaging in Premature Neonates to Predict Neurologic Outcomes
J Pediatr , Aug. 2013: 163(2)587-592
Growing Up in the Genomic Era: Implications of Whole-Genome Sequencing for Children, Families and Pediatric Practice
Annu Rev Genomics Hum Genet , Aug. 2013: 14535-55
Recommendations for returning genomic incidental findings? We need to talk!
Genet Med , Aug. 2013: 15(11)85459
Enhancing Children Against Unhealthy Behaviors An Ethical and Policy Assessment of Using a Nicotine Vaccine
Public Health Ethics , July 2013: 6(2)197-206
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
The Establishment of Research Ethics Consultation Services (RECS): An Emerging Research Resource
Clin Transl Sci , Feb. 2013: 6(1)40-4
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
Obstructive Sleep Apnea in a 17-Year-Old With Profound Cognitive Impairment
Pediatrics , Feb. 2013: 131(3)581-5
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
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
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
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
Research participants' perspectives on genotype-driven research recruitment.
Journal of empirical research on human research ethics : JERHRE , Dec. 2011: 6(4)3-20
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
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
Patient Perspectives on Group Benefits and Harms in Genetic Research
Public Health Genomics , 2011: 14(3)135-42
Growth Attenuation: Health Outcomes and Social Services
Hastings Center Report , 2011: 41(5)7-8

Presentations

Presentations TitleEventLocationDate
Research Ethics Consultation: Common Challenges and Tailored ApproachesAmerican Society of Bioethics and Humanities Annual MeetingWashington, DCOct. 19, 2012
Social work and Bioethics: A Call For CollaborationAmerican Society of Bioethics and Humanities Annual MeetingWashington, DCOct. 19, 2012
Research with Children: Complex Cases, Questions, and ConundrumsAchieving Excellence in Clinical Research: Scientific, Ethical and Operational Considerations, Advocate HealthChicago, ILSept. 28, 2012
Returning Incidental Findings to ParentsDisclosing Genomic Incidental Findings in Cancer Biobank, Working GroupMinneapolis, MNJune 1, 2012
Technological Interventions in Children with Profound Disabilities: Balancing Childrens Interests, Parental Preference, and Resource ConstraintProgram for Medical Ethics, Yale School of MedicineNew Haven, CTMarch 26, 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 NeedsBethesda, MDFeb. 2, 2012
Technological Interventions in Children with Profound Disabilities::Balancing Childrens Interests, Parental Preferences and Resource ConstraintGrand Rounds, Rady Childrens HospitalSan Diego, CAJan. 6, 2012
Wisconsin Cystic Fibrosis Study and Undisclosed Findings: Unanticipated Findings in Newborn ScreeningNBSTRN Bioethics and Legal Issues Workgroup, American College of Medical GeneticsBethesda, MDNov. 3, 2011
Transforming Clinical, Parental, and Society Discord About Disability: the Example of Trisomy 18 and 13American Society of Bioethics and Humanities Annual MeetingMinneapolis, MNOct. 13, 2011
Gene Discovery and EthicsBrain Development Conference, NeuroDevNetVancouver, BCJune 7, 2011
Policy Approaches to RecruitmentWorkshop on Ethical Approaches to Genotype Driven Research Recruitment, Duke UniversityRaleigh, NCMay 23, 2011
Assent in Genomic Research: Should We Return Individual Research Results and Incidental Findings from Genomic Biobanks and Archives?University of MinnesotaBethesda, MDMay 11, 2011
What Does it mean to Get Assent From Children in Pediatric Biobank Genomic ResearchPediatric Academic Society MeetingDenver, COMay 3, 2011
Assent for Children Enrolling in Biobanks: Not "Consent" for Little AdultsExploring the ELSI Universe, NHGRIChapel Hill, NCApril 13, 2011

Research Funding

Grant TitleGrantorAmountAward Date
ITHS Supplement - Attitudes about the Ethics of Standard of Care ResearchNIH/NCATSSept. 13, 2013
Clinical Implementation of Carrier Testing Using NGSNIH/NHGRIJune 15, 2013
Institute of Translational Health SciencesNIH/NCATSJune 1, 2012
Center for Genomics and Healthcare EquityNIH/NHGRIMay 14, 2010

Primary Office

Seattle Children's Research Institute
JMB - 6 - Clinical and Translational Research
1900 - 9th Ave
Seattle, WA 98101
206-884-8355

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