treuman katz center for pediatric bioethics 2017 year in review … · 2018-08-28 · the treuman...

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.

seattlechildrens.org/bioethics 3

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


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


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


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


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


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.


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.


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.


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

treuman katz center for pediatric bioethics 2017 year in review … · 2018-08-28 · the treuman...

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