Post on 20-Jun-2020
Treuman Katz Center for Pediatric Bioethics
2017 Year in Review
2 Treuman Katz Center for Pediatric Bioethics
OUR MISSION
To improve the lives of
children and their families
by enhancing the ethical
deliberations in pediatric
healthcare and research.Benjamin S. Wilfond, Director, Treuman Katz Center for Pediatric Bioethics
The Treuman Katz Center for Pediatric Bioethics had another productive year in 2017.
Highlights include:
Stephanie Kraft was appointed acting instructor in the Division of Bioethics and
joined the Center as faculty. Her research focuses on understanding patients’
perspective about the role of respect and how to convey this during research
recruitment in diverse communities.
Joon-Ho Yu was appointed research assistant professor in the Division of Genetic
Medicine and joined the Center as faculty. His research focuses on partnering with
community organizations to support their engagement with genomics researchers.
With support from Seattle Children’s Guild Association, the Nursing Bioethics Liaison
Program was established in 2015. The leaders of this program, Kristi Klee, DNP, MSN,
RN, CPN, and Leah Kroon, MN, RN, CPHON, completed our bioethics fellowship. The
Nursing Bioethics Liaison Program is now supported by the Department of Nursing
and 12 bioethics liaisons have been trained who work with their respective units
providing education and access to consults for challenging cases.
The Center was training six clinical fellows in 2017, the most ever. Research interests
range from ethical implications of puberty suppression for transgender adolescents
to the ethical appropriateness of interventions for sugar-sweetened beverages.
The information in the 2017 Year in Review provides updated information about the efforts of our faculty, fellows and staff to improve the lives of children and their families.
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Faculty News
• Douglas Diekema was elected as a Hastings Center Fellow.
• Abby Rosenberg received the Early Career Investigator Award from American Academy
of Hospice and Palliative Medicine.
Faculty, affi liates, fellows and staff members continue to advance our understanding of ethical issues through a diverse collection of projects and studies.
FACULTY AFFILIATES
Jonna Clark, MD, MA
Douglas Diekema, MD, MPH
Nanibaa’ Garrison, PhD
Katherine Gentry, MD, MA
Ross Hays, MD
Stephanie Kraft, JD
Mithya Lewis-Newby, MD, MPH
Douglas Opel, MD, MPH
Abby Rosenberg, MD, MS, MA
Seema Shah, JD
Elliott Weiss, MD, MSME
Aaron Wightman, MD, MA
Benjamin Wilfond, MD
Joon-Ho Yu, PhD, MPH
Denise Dudzinski, PhD, MTS
Kristi Klee, DNP, MSN, RN, CPN
Leah Kroon, MN, RN, CPHON
Jeff Sconyers, JD
4 Treuman Katz Center for Pediatric Bioethics
Scholarship
55 presentations including 27 at national and international meetings
79 publications including 54 peer-reviewed papers/organizational statements and 15 commentaries, editorials and letters
SELECTED PUBLICATIONS:
Ormond KE, Mortlock DP, Scholes DT, Bombard Y, Brody LC, Faucett WA, Garrison NA, Hercher L, Isasi R, Middleton A, Musunuru K, Shriner D, Virani A, Young CE. Human germline genome editing. American Journal of Human Genetics. 2017;101(2):167-176.
Opel DJ, Schwartz JL, Omer SB, Silverman R, Duchin J, Kodish E, Diekema DS, Marcuse EK, Orenstein W. Achieving an optimal childhood vaccine policy. JAMA Pediatrics. 2017;171(9):893-896.
Porter KM, Cho MK, Kraft SA, Korngiebel DM, Constantine M, Lee SS, Kelley M, James C, Kuwana E, Meyer A, Diekema D, Capron AM, Magnus D, Wilfond BS. Research on medical practices (ROMP): Attitudes of IRB personnel about randomization and informed consent. IRB: Ethics & Human Research. 2017;39(1):10-16.
Rosenberg AR, Wolfe J. Approaching the third decade of paediatric palliative oncology investigation: Historical progress and future directions. Lancet Child and Adolescent Health. 2017;1(1):56-67.
Shah SK, Rosenberg AR, Diekema DS. Charlie Gard and the limits of best interests. JAMA Pediatrics. 2017;171(10):937-938.
Jecker NS, Wightman AG, Rosenberg AR, Diekema DS. From protection to entitlement: Selecting research subjects for early phase clinical trials involving breakthrough therapies. Journal of Medical Ethics. 2017;43(6):391-400.
Wightman A. Management dilemmas in pediatric nephrology: Time-limited trials of dialysis therapy. Pediatric Nephrology. 2017;32(4):615-620.
Kauffman TL, Wilfond BS, Jarvik GP, Leo MC, Lynch FL, Reiss JA, Richards CS, McMullen C, Nickerson D, Dorschner MO, Goddard KA. Design of a randomized controlled trial for genomic carrier screening in healthy patients seeking preconception genetic testing. Contemporary Clinical Trials. 2017;53:100-105.
PRESENTATION HIGHLIGHTS
Douglas DiekemaServing International Patients With Specialized Medical Care: Exploring the Impact on Local Communities and the Ethical Obligations of Institutions
American Society of Bioethics and Humanities Annual Meeting, Kansas City, MO. October, 2017.
Nanibaa’ GarrisonDiversity Matters: Scientifi c and Ethical Strategies for Achieving Representation in Genomics
American Society of Human Genetics Annual Meeting, Orlando, FL. October 2017.
Stephanie KraftBeyond the Therapeutic Misconception: The Challenges of New Misconceptions About Research
American Society for Bioethics and Humanities Annual Meeting, Kansas City, MO. October 2017.
randomized controlled trial for genomic carrier screening in healthy patients Contemporary Clinical Trials
randomized controlled trial for genomic carrier screening in healthy patients Contemporary Clinical Trials
randomized controlled trial for genomic carrier screening in healthy patients randomized controlled trial for genomic carrier screening in healthy patients randomized controlled trial for genomic carrier screening in healthy patients randomized controlled trial for genomic carrier screening in healthy patients randomized controlled trial for genomic carrier screening in healthy patients randomized controlled trial for genomic carrier screening in healthy patients CS, McMullen C, Nickerson D, Dorschner MO, Goddard KA. Design of a randomized controlled trial for genomic carrier screening in healthy patients randomized controlled trial for genomic carrier screening in healthy patients CS, McMullen C, Nickerson D, Dorschner MO, Goddard KA. Design of a CS, McMullen C, Nickerson D, Dorschner MO, Goddard KA. Design of a randomized controlled trial for genomic carrier screening in healthy patients CS, McMullen C, Nickerson D, Dorschner MO, Goddard KA. Design of a CS, McMullen C, Nickerson D, Dorschner MO, Goddard KA. Design of a CS, McMullen C, Nickerson D, Dorschner MO, Goddard KA. Design of a
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Publications 2013 - 2017 PRESENTATION HIGHLIGHTS
Douglas OpelReject or Retain? A Debate on Non-medical Exemptions in Childhood Vaccine Policy
Pediatric Academic Societies Annual Meeting, San Francisco, CA. May 2017.
Seema ShahEthical Considerations for Zika Virus Human Challenge Trials
American Society for Bioethics and Humanities Annual Meeting, Kansas City, MO. October 2017.
Elliott WeissPersonalized Decision-Making in Pediatrics: Who Should Be at the Center of Medical Decisions?
American Society of Bioethics and Humanities Annual Meeting, Kansas City, MO. Oct 2017.
National Leadership
SELECTED HIGHLIGHTS:
• Douglas Diekema, National Conference and Exhibition Planning Committee (Executive Committee Member), American Academy of Pediatrics
• Nanibaa’ Garrison, Social Issues Committee, American Society of Human Genetics
• Abby Rosenberg, Bioethics Steering Committee, Children’s Oncology Group
• Aaron Wightman, Chair, Bioethics Subcommittee, American Society of Pediatric Nephrology
• Benjamin Wilfond, Standing Committee on Ethics, Canadian Institutes for Health Research
• Joon-Ho Yu, Planning Committee, Ethical, Legal and Social Implications (ELSI) Congress, National Human Genomic Research InstituteGenomic Research InstituteSocial Implications (ELSI) Congress, National Human Social Implications (ELSI) Congress, National Human
, Planning Committee, Ethical, Legal and , Planning Committee, Ethical, Legal and
Canadian Institutes for Health ResearchBenjamin WilfondCanadian Institutes for Health ResearchBenjamin WilfondBenjamin Wilfond
American Society of Pediatric NephrologyAmerican Society of Pediatric NephrologyAmerican Society of Pediatric NephrologyAmerican Society of Pediatric NephrologyAmerican Society of Pediatric NephrologyAmerican Society of Pediatric Nephrology
6 Treuman Katz Center for Pediatric Bioethics
Funded Research Projects
12 new projects (21 submitted)
SELECTED HIGHLIGHTS:
• Nanibaa’ Garrison, Perspectives and Attitudes on Genetic Research in the Navajo NationCenter for Clinical and Translational Research Pediatric Pilot Fund
• Doug Opel, Adolescent Immunization Learning Collaborative Public Health Seattle & King County
• Abby Rosenberg, Resilience Outcomes Among Adolescents and Young Adults With Advanced CancerAmerican Cancer Society Research Scholar Grant
• Seema Shah, A New Ethical and Regulatory Approach for the Use of Human Challenge Studies With Emerging Infectious DiseasesGreenwall Foundation—Making a Difference Grant
• Elliott Weiss, MD, Parental Attitudes in Neonatal Clinical Trial Enrollment: Decision-Making Preferences and Reasoning Among Participants and Non-ParticipantsCenter for Clinical and Translational Research Clinical Research Scholars Program
• Benjamin Wilfond, Exome Sequencing in Diverse Populations in Colorado and OregonNational Human Genome Research Institute
Grant Applications 2013 - 2017
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Consultation
Our clinical ethics consultants completed 41 consults in 2017.
• Most common topics: treatment decisions (19), limitation of life-sustaining treatment (4), resource allocation (4), benefit/harm assessment (3), disclosure of results/information to patient/family (2), informed consent/parental permission (2), religious beliefs (2)
• Requesting services include: critical care (6), neonatal intensive care (6), hematology-oncology (5), palliative care (4), hospital medicine (3), surgical service line management (2)
Our research ethics consultants completed 8 consults in 2017.
• Most common topics: community considerations (2), recruitment/incentives (2)
• Requesting services include (1 each): Cystic Fibrosis Therapeutics Development Network, pediatric critical care medicine, UW Institute of Translational Health Sciences, UW Department of Global Health, UW Institute for Stem Cell and Regenerative Medicine
13th Annual Conference
In 2017, 180 clinicians and scholars from the U.S. and worldwide attended The Cutting Edge: Ethical Controversies in Pediatric Surgery.
QUESTIONS DISCUSSED AT THE CONFERENCE INCLUDED:
• Should parents be allowed to refuse a solid organ transplant?
• Are surgical complications different from medical errors?
• Should surgeons share their success rates prior to surgery?
• Should babies with Trisomy 18 be eligible for cardiac surgery?
• Should innovative surgical techniques be subject to regulatory oversight?
The Cutting Edge Ethical Controversies in Pediatric Surgery
13th Annual Pediatric Bioethics Conference
8 Treuman Katz Center for Pediatric Bioethics
2017 Kristi Klee, DNP, MSN, RN, CPN, is a nursing practice support leader
who completed the bioethics fellowship. She is co-leading the Nursing
Bioethics Liaison program, where she trains other nurses in ethical issues
that commonly arise in clinical care.
2017 Leah Kroon, MN, RN, CPHON, is a clinical nurse specialist who
completed the bioethics fellowship. She is co-leading the Nursing Bioethics
Liaison program, where she trains other nurses in ethical issues that
commonly arise in clinical care.
Bioethics Fellows
2016–present Emily Berkman, MD, is a pediatric critical care medicine
fellow in her second year of the bioethics fellowship. Her research focuses
on exploring the impact of recruiting international patients on resource
allocation decisions in pediatric intensive care units in this country.
2017 Tyler Tate, MD, is a pediatrician who completed the bioethics
fellowship and started a fellowship in Hospice & Palliative Medicine at Duke
University School of Medicine.
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2016–present Jessica Jeavons, JD, is in her second year of the bioethics
fellowship. Her research focuses on the ethical appropriateness of public
health interventions to reduce the use of sugar-sweetened beverages.
2016–present Jeanne Krick, MD, is a neonatology fellow in her second
year of the bioethics fellowship. Her research focuses on the parental
experience of uncertainty in neonatal intensive care units.
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Spotlight on Research
Organ Transplants for Children With Profound Intellectual Disabilities: Examining the Ethical Considerations in Policy Decisions
Prior to the 1990s, children were denied access to solid
organ transplantation due to intellectual disability. Reasons
cited include reduced life expectancy, a lack of cognitive
ability to understand transplantation and comply with the
required post-transplant therapy, a lack of improvement in
quality of life, and the scarcity of available organs.
Since 1995, the American Society of Transplant Physicians
guidelines state that cognitive impairment should be
considered a contraindication to transplantation only
when it is so severe as to impair adherence with essential
medication regimens and no caregiver is available to
compensate for the individual’s limitations. Yet a 2006
survey of pediatric transplant centers reported that 56%
of transplant centers would consider an IQ of less than 35
a relative contraindication to solid organ transplantation.
Additionally, 38% of centers reported at least one patient
who had been evaluated and was not listed for transplant
but would have, but for the presence of intellectual
disability.
Pediatric nephrologist and Treuman Katz Center faculty
Aaron Wightman and collaborators analyzed data from
the UNOS database to identify pediatric recipients of heart,
liver or kidney transplant with intellectual disabilities. They
found that children with intellectual disabilities comprise
a significant minority of pediatric transplant recipients
(up to 24% for heart, 15% for liver and 16% for kidney).
These recipients had early (3–5 year) patient and allograft
survival that were no different than the intellectually
typical pediatric recipients. Similarly, for heart and liver
transplantation there was no difference between groups in
Aaron Wightman’s research focuses on determining relevant factors to weigh for children with intellectual disabilities to guide policy decision for organ transplants.
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improvement in functional status. These studies provided
the first national large-scale description of children
with intellectual disability who underwent solid organ
transplantation.
Wightman and collaborators, including Treuman Katz
Center faculty Douglas Diekema, have used empirical data
to further explore normative arguments for and against
inclusion of this population in solid organ transplant, along
with other considerations such as donor source, organ
scarcity, quality of life, transition to adulthood, risk to
transplant centers, and the consideration of other forms of
renal replacement therapies.
The team has concluded that there is no evidence to
support assumptions that children with disabilities have
any lower benefit than any other patient on the wait list.
Fairness requires applying criteria to all in an equal manner
and avoiding discriminating between individuals on morally
irrelevant grounds. Policy decisions to not offer a transplant
to a child with profound intellectual disabilities, then,
perhaps reflect social values rather than medical factors
and are in violation of guidelines intended to assure equal
access to care.
Solid organ allocation policies represent a clear application of rationing and require a balance of
the principles of utility and justice. Our work seeks to inform and improve the development of
ethical policies for organ allocation for children.”
— Aaron Wightman
PRIMARY COLLABORATORS
• Jodi Smith, Douglas Diekema, Miranda Bradford, Evelyn Hsu, Seattle Children’s
• Heather Bartlett, University of Wisconsin School of Medicine and Public Health
• Aviva Goldberg, University of Manitoba
FUNDING
• Clinical Research Scholars Program, Center for Clinical and Translational Research, Seattle Children’s