Treuman Katz Center for Pediatric Bioethics
Join us July 19–20 for our 2019 conference, “Defining Moments in Pediatric Bioethics: Future Insights From Past Controversies.” Registration is now open.
She is studying how best to offer genomic sequencing to medically underserved primary care patients with a family history of breast or colon cancer.
She is working to improve the informed consent process around anesthesia information, especially for families who do not speak English as a first language.
Partnerships are an essential part of the Treuman Katz Center’s mission. Our researchers collaborate with colleagues across the nation and around the world in pursuit of answers to complex bioethics questions.
Our partners include the Center for Clinical and Translational Research at Seattle Children’s Research Institute and the Department of Bioethics and Humanities and the Institute of Translational Health Sciences at the University of Washington.
Our bioethicists provide practical guidance to families, providers, researchers and policymakers about patient care, public health and research issues. Our consultation service is available to colleagues throughout Seattle Children’s and the University of Washington, and we offer informal advice to people at outside institutions. Learn more about our services.
Bombard Y, Brothers KB, Fitzgerald-Butt S, Garrison NA, Jamal L, James CA, Jarvik GP, McCormick JB, Nelson TN, Ormond KE, Rehm HL, Richer J, Souzeau E, Vassy JL, Wagner JK, Levy HP. The Responsibility to Recontact Research Participants after Reinterpretation of Genetic and Genomic Research Results. American Journal of Human Genetics. 2019 Apr 4;104(4):578-595.
Kraft SA, Duenas D, Wilfond BS, Goddard KAB. The evolving landscape of expanded carrier screening: challenges and opportunities. Genetics in Medicine. 2019 Apr;21(4):790-797.
Rosenberg AR, Bona K, Coker T, Feudtner C, Houston K, Ibrahim A, Macauley R, Wolfe J, Hays R. Pediatric Palliative Care in the Multicultural Context: Findings From a Workshop Conference. Journal of Pain and Symptom Management. 2019 Apr;57(4):846-855.e2.
Johnston EE, Bogetz J, Saynina O, Chamberlain LJ, Bhatia S, Sanders L. Disparities in Inpatient Intensity of End-of-Life Care for Complex Chronic Conditions. Pediatrics. 2019 May;143(5). pii: e20182228
Lepere K, Etsekson N, Opel DJ. Provider Self-Disclosure During the Childhood Vaccine Discussion. Clinical Pediatrics. 2018 Dec 5:9922818817828.
McGuire AL, Majumder MA, Villanueva AG, Bardill J, Bollinger JM, Boerwinkle E, Bubela T, Deverka PA, Evans BJ, Garrison NA, Glazer D, Goldstein MM, Greely HT, Kahn SD, Knoppers BM, Koenig BA, Lambright JM, Mattison JE, O'Donnell C, Rai AK, Rodriguez LL, Simoncelli T, Terry SF, Thorogood AM, Watson MS, Wilbanks JT, Cook-Deegan R. Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons. The Journal of Law, Medicine & Ethics. 2019 Mar;47(1):12-20.
Ketterl TG, Syrjala KL, Casillas J, Jacobs LA, Palmer SC, McCabe MS, Ganz PA, Overholser L, Partridge A, Rajotte EJ, Rosenberg AR, Risendal B, Rosenstein DL, Baker KS. Lasting effects of cancer and its treatment on employment and finances in adolescent and young adult cancer survivors. Cancer. 2019 Jun 1;125(11):1908-1917.
Weiss EM, Magnus BE, Coughlin K. Factors associated with decision-making preferences among parents of infants in neonatal intensive care. Acta Paediatrica. 2019 May;108(5):967-968.
Johnson LM, Zabrowski J, Wilfond BS. Should Research Participants Be Notified About Results of Currently Unknown but Potential Significance? The American Journal of Bioethics. 2019 Apr;19(4):73-74.
Wilfond BS, Zabrowski J, Johnson LM. The Limitations of "Boilerplate" Language in Informed Consent: Single IRB Review of Multisite Genetic Research in Military Personnel. The American Journal of Bioethics. 2019 Apr;19(4):81-82.
Hart MR, Biesecker BB, Blout CL, Christensen KD, Amendola LM, Bergstrom KL, Biswas S, Bowling KM, Brothers KB, Conlin LK, Cooper GM, Dulik MC, East KM, Everett JN, Finnila CR, Ghazani AA, Gilmore MJ, Goddard KAB, Jarvik GP, Johnston JJ, Kauffman TL, Kelley WV, Krier JB, Lewis KL, McGuire AL, McMullen C, Ou J, Plon SE, Rehm HL, Richards CS, Romasko EJ, Sagardia AM, Spinner NB, Thompson ML, Turbitt E, Vassy JL, Wilfond BS, Veenstra DL, Berg JS, Green RC, Biesecker LG, Hindorff LA. Correction: Secondary findings from clinical genomic sequencing: prevalence, patient perspectives, family history assessment, and health-care costs from a multisite study. Genet Med. 2019 May;21(5):1261-1262.
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Our Experts in the Media
- Facing up to injustice in genome science – 4.18.19 – Nature
A growing number of researchers have made consultation and community involvement central to their work with Indigenous and other marginalized populations. Dr. Nanibaa’ Garrison, a geneticist and bioethicist at Seattle Children’s, interviewed Native American leaders, educators and community members about their concerns and suggestions on how to improve genetic research in tribal communities. “If tribes feel empowered to make decisions for themselves, rather than relying on other people, that may lead to greater engagement,” Garrison said.
- Photo Gallery: UC's 'Research & Innovation Week' showcases extraordinary work – 4.11.19 – University of Cincinnati News
At UC's R&I Hutton Ethics Lecture, keynote speaker Dr. Benjamin Wilfond from Seattle Children's Research Institute asked, "Why does medical research and clinical work have to exist separate from one another?"
- How is measles still a problem in Washington? – 3.26.19 – Seattle Met
A recent measles outbreak in southwest Washington escalated to over 50 confirmed cases. Despite the evidence behind vaccines, people usually stick to what they feel is true, says Dr. Douglas Diekema, an emergency physician at Seattle Children’s. “It doesn’t matter what the data shows,” he says. “A story will always trump data.”
- Is refusing vaccine for child after near-death crisis parental abuse or neglect under Oregon law? What the experts say – 3.24.19 – The Oregonian
Dr. Doug Opel, a pediatrician at Seattle Children’s, deals with parents who are reluctant to vaccine their children all the time. “I guess I would say one could really argue that a parent’s refusal of a recommended vaccine is on some level neglectful,” said Opel. “But there’s a separate question whether a state ought to get involved and remove their decision-making authority.” That question quickly took center stage in the vaccination debate when Oregon doctors recently publicized the case of a 6-year-old boy who spent eight weeks in intensive care because he got tetanus.
- Mandatory MMR vaccine a possibility in Washington state – 2.7.19 – Seattle Weekly
A new house bill could add pressure on Washington parents to vaccinate their children. HB 1638, a more urgently pressed piece of legislation because of the ongoing state measles outbreak, would remove the personal and religious exemptions currently allowed for the MMR vaccine. “The measles causes different sorts of problems, but this is an example of how powerful vaccinations can be at eliminating or getting close to getting rid of these horrible diseases of childhood,” said Dr. Douglas Diekema, a physician at Seattle Children’s.
- Vaccine skeptics fight Washington bill to end personal exemptions – 1.30.19 – The Stranger
In the midst of a measles outbreak, Washington legislators introduced a bill to end personal exemptions from vaccines. According to Dr. Douglas Diekema, a physician in the ED at Seattle Children’s, there is no credible evidence an allergic reaction to any vaccine causes autism. “Researchers from multiple countries have published studies containing tens of thousands, if not hundreds of thousands, of children, and there is nothing there,” said Diekema.