Treuman Katz Center for Pediatric Bioethics
Our 2018 conference, When Cultures Clash: Navigating Ethical Disagreements Related to Diversity, took place July 20–21. Videos are now available.
Congratulations to Dr. Douglas Diekema on his election as one of nine members-at-large to the Board of Directors for the American Society for Bioethics and Humanities (ASBH). This three-year position starts October 19, 2018. “I am excited to be joining the board of the ASBH and have the opportunity to shape the future of our national organization,” Diekema said. ASBH is an educational organization for professionals engaged in all endeavors related to clinical and academic bioethics and the health-related humanities.
She is studying how best to offer genomic sequencing to medically underserved primary care patients with a family history of breast or colon cancer.
He is examining how parents decide whether to enroll their infant in a research study.
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 Humanitiesand 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.
Antommaria AHM, Brothers KB, Myers JA, Feygin YB, Aufox SA, Brilliant MH, Conway P, Fullerton SM, Garrison NA, Horowitz CR, Jarvik GP, Li R, Ludman EJ, McCarty CA, McCormick JB, Mercaldo ND, Myers MF, Sanderson SC, Shrubsole MJ, Schildcrout JS, Williams JL, Smith ME, Clayton EW, Holm IA. Parents' attitudes toward consent and data sharing in biobanks: A multisite experimental survey. AJOB Empirical Bioethics. 2018 Sep 21:1-15.
Hofstetter AM, Simon TD, Lepere K, Ranade D, Strelitz B, Englund JA, Opel DJ. Parental vaccine hesitancy and declination of influenza vaccination among hospitalized children. Hospital Pediatrics. 2018 Oct;8(10):628-635.
MacDonald NE, Harmon S, Dube E, Steenbeek A, Crowcroft N, Opel DJ, Faour D, Leask J, Butler R. Mandatory infant & childhood immunization: Rationales, issues and knowledge gaps. Vaccine. 2018 Sep 18;36(39):5811-5818.
Amendola LM, Berg JS, Horowitz CR, Angelo F, Bensen JT, Biesecker BB, Biesecker LG, Cooper GM, East K, Filipski K, Fullerton SM, Gelb BD, Goddard KAB, Hailu B, Hart R, Hassmiller-Lich K, Joseph G, Kenny EE, Koenig BA, Knight S, Kwok PY, Lewis KL, McGuire AL, Norton ME, Ou J, Parsons DW, Powell BC, Risch N, Robinson M, Rini C, Scollon S, Slavotinek AM, Veenstra DL, Wasserstein MP, Wilfond BS, Hindorff LA; CSER consortium, Plon SE, Jarvik GP. The Clinical Sequencing Evidence-Generating Research Consortium: Integrating genomic sequencing in diverse and medically underserved populations. American Journal of Human Genetics. 2018 Sep 6;103(3):319-327.
Taylor HA, Morales C, Johnson LM, Wilfond BS. A randomized trial of rapamycin to increase longevity and healthspan in companion animals: navigating the boundary between protections for animal research and human subjects research. American Journal of Bioethics. 2018 Oct;18(10):58-59.
Wilfond BS, Morales C, Johnson LM, Taylor HA. Ethical considerations for unblinding a participant's assignment to interpret a resolved adverse event. American Journal of Bioethics. 2018 Oct;18(10):66-67.
Wilfond BS, Porter KM, Creevy KE, Kaeberlein M, Promislow D. Research to promote longevity and health span in companion dogs: A pediatric perspective. American Journal of Bioethics. 2018 Oct;18(10):64-65.
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Our Experts in the Media
Compatible with life? – Stanford Medicine
Dr. Benjamin Wilfond, a bioethicist and pediatric pulmonologist at Seattle Children’s Hospital, is a longtime advocate for broader interventions for children with trisomy 13 and 18. Recently, one of Wilfond’s trisomy 18 patients in Seattle had chronic respiratory failure and a heart defect. She received a tracheostomy and spent several months on a ventilator. Eventually, she could breathe on her own and was healthy enough to receive surgery. She’s now 3.
Seeking greater inclusivity in genomics research – 11.1.18 – Forbes
There have been a number of recent efforts, many led by indigenous scientists around the world, to draw attention and offer solutions to issues with research among under-represented communities. Dr. Nanibaa’ Garrison, a bioethicist at Seattle Children's Research Institute and a member of the Navajo Nation, advocates for “increasing the training and capacity of Indigenous people so that they can bring a much-needed perspective to the interpretations of the results,” she said.
- The real problem with Elizabeth Warren's DNA test: Geneticists – 10.18.18 – ABC News
Does Massachusetts Senator Elizabeth Warren really have Native American blood running through her veins? It's scientifically impossible to know for sure, according to a collection of leading geneticists, industry experts, research scientists with expertise in indigenous genetics and Native American leaders who spoke with ABC News. “It's hard to say that there is a definitive conclusion, especially if someone has such small amounts of Native American ancestry,” said Dr. Nanibaa’ Garrison, a faculty member in the Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Research Institute. “When you're testing someone who might have an ancestor more than four or five generations back, that's when it becomes very hard to piece out that ancestor from all the other ancestors that the person has. It's not a yes or no answer.”
To overcome decades of mistrust, a workshop aims to train Indigenous researchers to be their own genome experts – 9.27.18 – Science
The Summer Internship for Indigenous Peoples in Genomics (SING) is a weeklong program funded by the NIH and the National Science Foundation, and held this year at UW. SING aims to train Indigenous scientists in genomics so that they can introduce that field's tools to their communities as well as bring a sorely needed Indigenous perspective to research. One pioneer is Dr. Nanibaa' Garrison, a member of the Navajo Nation. "I wanted to find a way to do it better. To do things right," she says. She's now a bioethicist at Seattle Children’s Research Institute and UW, developing ethical approaches to research with Indigenous communities. "I wanted to see more people like me," in genetics, she says. "And I wanted to change the story."
- Seattle Children’s works to turn PRISM program into an mHealth app – 8.20.18 – mHealthIntelligence
Physicians at Seattle Children’s are working to turn a web-based coping program for children with serious illnesses into an mHealth app. The Promoting Resiliency in Stress Management (PRISM) program has helped young patients with health issues like cancer and type 1 diabetes – and their families – develop physical and emotional skills to better deal with the challenges that a chronic disease has thrown into their lives. Now Dr. Abby Rosenberg, who created PRISM with Dr. Joyce Yi-Frazier, wants to scale up the program and make it more accessible. That means creating a platform for the program on mobile devices like the smartphone and tablet. “This is the language that young people today speak,” Rosenberg said. “We essentially need to translate what we have now into something that will live in the digital space.
- The circumcision debate: A brief history – 6.25.18 – Crixeo
In the U.S., there is controversy surrounding circumcision. In a 2012 policy statement, the AAP found that “preventive health benefits of elective circumcision of male newborns outweigh the risks of the procedure.” The health benefits cited in the report included a slightly reduced risk (about 1%) of urinary tract infections during the first year of life, lower risk of HIV and other STDs, and lower risk of penile cancer. The risks of circumcision were more difficult to define. Dr. Douglas Diekema, a pediatrician with the Treuman Katz Center for Pediatric Bioethicsat the Seattle Children’s Research Institute, is a coauthor of the AAP policy statement. “There are risks, but the incidence of serious adverse events is very low when performed by an experienced practitioner using sterile technique,” Diekema said. “The most common complications are minor and include bleeding, which stops with a few minutes of applied pressure, and minor skin infections.”
The circumcision debate: A brief history – Blogarama
- Can we respectfully disagree? Navigating cultural differences in healthcare – 6.20.18 – On the Pulse
Providers often must negotiate with patients and families, but how should disagreements be addressed when the discrepancy is rooted in the patient’s culture or beliefs? Bioethics consultant Dr. Doug Diekema, director of education in the Treuman Katz Center, discussed how we should navigate ethical disagreements related to diversity in a Q&A.
- Low vaccination rates in King County cause for concern – 6.15.18 – KING5.com
King County had the third-highest number of parents claiming exemptions from vaccine requirements for their children last year, according to a new study. Experts warn that this may leave residents of Washington’s most populous county vulnerable to outbreaks of deadly disease. While doctors can’t say with certainty what causes any given outbreak, “there is good data to suggest that unvaccinated children are at risk for serious infections and can promote the spread of vaccine-preventable diseases in their community,” said Dr. Doug Opel, general pediatrician at Seattle Children’s and associate professor of pediatrics at the UW School of Medicine.
- Vaccines work, whether or not you believe in them – 6.3.18 – TWiV (This Week in Virology)
Dr. Douglas Diekema is one of the experts interviewed about vaccine facts and fiction at the Vaccines in the 21st Century meeting at the University of California, Irvine.
- Build resilience in kids to prevent suicide – 5.25.18 – KING5.com
Suicide is the number one cause of death for children in Washington state between 10–14 years old. Building resilience is one way parents or caregivers can help their kids better navigate difficult times. Dr. Abby Rosenberg is a pediatric oncologist at Seattle Children's Hospital who studies resilience among young cancer patients, and she shared three findings on how we can build resilience in all children.
- Deep Dive: Building resilience – 5.24.18 – KING5.com
The number-one cause of death in children in Washington state between ages 10–14 is suicide. One of the major ways to prevent suicide is resilience, a person’s ability to adapt to stress and change. Dr. Abby Rosenberg at Seattle Children’s has studied resilience in kids who are facing cancer. Rosenberg said resilience can be developed and used for any type of adversity, and you can get it by developing resources. The three types of resources for building resilience are: individual, community and beliefs.
- New ethics encourage engagement with indigenous community – 5.9.18 – Kansas Ag Connection
A collaborative group of indigenous and nonindigenous scholars encourages scientists to meaningfully engage with indigenous communities on paleogenomics research in a new series of ethical guidelines published in the journal Science. Dr. Nanibaa’ Garrison, a bioethics professor at Seattle Children's Research Institute and the University of Washington School of Medicine and a co-author of the report, said engaging communities at the outset is critical for understanding their concerns or questions about research involving ancient relatives.
- Considering indigenous communities when researching ancient human remains – 5.3.18 – BBC News
BBC Radio 4 spoke with Dr. Nanibaa’ Garrison, a bioethicist at Seattle Children’s Research Institute and the UW School of Medicine, about an article in the journal Science that she co-authored on the ethical guidelines in paleogenomic research involving ancient human remains.
- Respect Indigenous ancestors: Scholars urge community engagement before research – 4.26.18 –Phys.org
A new article in the journal Science provides guidance for those intending to study ancient human remains in the Americas. The paper offers a clear directive: First, do no harm. "Engaging communities at the outset is critical for understanding their concerns or questions about research involving ancient relatives. Without feedback from the community, scientific interpretations remain one-sided and inherently biased," said Dr. Nanibaa’Garrison, a bioethics professor at Seattle Children's Research Institute and the UW School of Medicine, and a co-author of the article.
- Commentary: Trying to learn the lesson of Kennewick Man – 4.26.18 – UW Medicine Newsroom
- New ethical guidelines encourage scientists to engage with indigenous communities before studying ancient remains – 4.24.18 – KU News Service