Skip to navigation menu Skip to content

Welcome to the Wilfond Lab

Dr. Wilfond, his collaborators, research team members, and trainees have made key contributions to improve the experience of families with trisomy 18 and other profound disabilities in accessing medical care; to understand the impact of newborn screening, carrier testing, and genetic testing on children and families; and to developing ethical approaches to conducting research on medical practices. Much of his scholarship is conceptual but he has conducted a wide range of qualitative research projects and has worked collaboratively on many quantitative projects. He has more than 25 years of experience as a research ethics consultant and contributed to the development of this emerging practice through leadership, scholarship, and service.

One cross-cutting approach across his teams’ projects is developing method to communicating complex issues to people so that they can either express their perspectives on the issues to inform policies or can use the information make better quality decisions about health care or research. For close to a decade, he and his collaborators have worked with BoosterShotMedia, a creative communications team, to develop engaging audio-visual materials, including web-tools, comics and videos which have been integrated into many research projects. In the last five years, he and his collaborators have focused their research on the experiences of diverse communities that are typically under-represented in research.

Current Research/Scholarship Projects

The Wilfond Lab is currently focused on three research initiatives. One initiative has the goal to improve family and clinician collaborative decision-making for tracheostomies and home mechanical ventilation. The goal of the second initiative is to improve access to genetic services in healthy adults from diverse backgrounds to reduce risks from cancer. Third, is tailoring the informed consent process to better support research decisions in the contexts of 1) developing new and novel treatments for rare diseases, and 2 research on standard practices that is pragmatically integrated into ongoing clinical care. Dr Wilfond has collaborations with colleagues at Kaiser Northwest, Denver Health, University of California-San Francisco, Johns Hopkins University, University of University of Mississippi, Stanford University, Emory University and many others on projects related to disabilities and genetics, as well as on projects related to research ethics.


“What it means for our family” – Video Decision Supports for Parents Considering Chronic Pediatric Mechanical Ventilation

National Palliative Care Research Center
Co- Investigator

Genomic medicine and genomics research

Cancer Health Assessments Reaching Many (CHARM)

U01 HG007292 NHGRI
Multi-Principal Investigator                                                              

Building capacity to guide disclosure of genomic research results in the Chronic Kidney Disease in Children Study

U01 DK066143-19S1 NIDDK

Genetic Screening for Adult-Onset Inherited Cancer Syndromes in Minors: Policy Implications

R01 CA246589-S1 NCI

The Dog Aging Project: Genetic and Environmental Determinants of Healthy Aging in Companion Dogs

U19 AG057377 NIA

Research within health care systems on standard treatments

Health Care Systems Research Collaboratory

U24 AT009676 NCCAM
Ethics and Regulatory Core Member

Hyperhydration to Improve Kidney Outcomes in Children with Shiga Toxin-Producing E. Coli Infection (HIKO STEC): A Multinational, Embedded, Cluster, Crossover, Randomized Trial

R01 AI16532 NIAID

Structured Family Deliberation for Decisions about Home Ventilation: A Pilot Study

Seattle Children’s CCTR Pilot award
Multi-Principal Investigator

Emerging cellular and genetic therapies

Supporting Patient and Community Engagement in Prospective Evaluation of Barriers to Patient Referral and Enrollment in Emerging Cellular Therapy Trials: Determining Methods and Structure to Improve Equity in Future Trial Design

U01 TR002487-03S1 NCATS

Novel Gene Therapies for Pediatric and Young Adults with Sickle Cell Disease: Engaging Patient and Parent Stakeholders

Center for ESLI Resources and Analysis (NHGRI)
CERA Working Group Steering committee member 

Cystic Fibrosis Gene Therapy Working Group

Cystic Fibrosis Foundation
Research Team Education Sub-Working Group member

Highlighted Publications

  1. Janvier A, Farlow B, Wilfond BS. The experience of families with children with trisomy 13 and 18 in social networks. Pediatrics. 2012;130(2):293-8
  2. Cho MK, Magnus D, Constantine M, Lee SS, Kelley M, Alessi S, Korngiebel D, James C, Kuwana E, Gallagher TH, Diekema D, Capron AM, Joffe S, Wilfond BS. Attitudes Toward Risk and Informed Consent for Research on Medical Practices: A Cross-sectional Survey. Ann Intern Med. 2015;162(10):690-6. 
  3. Wilfond BS, Kauffman TL, Jarvik GP, Reiss JA, Richards CS, McMullen C, Gilmore M, Himes P, Kraft SA, Porter KM, Schneider JL, Punj S, Leo MC, Dickerson JF, Lynch FL, Clarke E, Rope AF, Lutz K, Goddard KAB. Lessons learned from a study of genomics-based carrier screening for reproductive decision making. Health Aff (Millwood). 2018; 37(5):809-816.
  4. Riddle L, Amendola LM, Gilmore MJ, Guerra C, Biesecker B, Kauffman TL, Anderson K, Rope AF, Leo MC, Caruncho M, Jarvik GP, Wilfond B, Goddard KAB, Joseph G. Development and early implementation of an Accessible, Relational, Inclusive and Actionable approach to genetic counseling: The ARIA model. Patient Educ Couns. 2021;104(5):969-978.
  5. Boss RD, Henderson CM, Raisanen JC, Jabre NA, Shipman K, Wilfond BS. Family experiences deciding for and against pediatric home ventilation. J Pediatr. 2021;229:223-231

Participate in Research

Help us answer questions about childhood health and illness and help other children in the future. Learn more.

Contact Us

Treuman Katz Center for Pediatric Bioethics and Palliative Care

For questions or inquiries,
call: 206-884-8355.

Physical Address

1900 Ninth Ave.
Seattle, WA 98101

Mailing Address

1900 Ninth Ave.
Seattle, WA 98101