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Saturday, April 29
8:00am–11:00am
2115—Genetics and the Pediatric Medical
Educator: What We Need To Know and How Can We Teach It
PAS Mini Course
Room 2006, Moscone West
Chairs: Joseph Gigante, Vanderbilt Children's Hospital, Nashville, TN;
and Marilyn C. Dumont-Driscoll, University of Florida College
of Medicine, Gainesville, FL
Target Audience: Medical
educators, general pediatricians and anyone who would like to
learn more about how genetics affects primary care.
There have been rapid advances in
knowledge and technology in the field of genetics. General
pediatricians have become the first line of information and
counseling for patients and families seeking to understand the
unique role of genetics in their overall medical care. Yet
genetics has played a relatively small part in the medical
school curriculum, and the emerging gap in physician knowledge
has created an enormous need for education in a previously
underemphasized area of medical education. Genetic medicine
also raises some of the most subtle medical, psychosocial,
cultural and bioethical dilemmas faced by primary care
pediatricians and their patients.
This mini course is designed to
help participants understand and incorporate genetics in their
patient encounters, as well as enhance their comfort in
teaching genetics. Using a collaborative faculty presentation,
basic genetic concepts, core competencies and new paradigms
will be discussed. Strategies for incorporating genetics into
primary care practice and teaching genetics will include case
presentations; “missed opportunities,” where genetics
impacts a patient and pediatrician; and interactive
educational games that can be used at the participant’s own
site. Resources, such as internet sites that contain current
genetic information, will be distributed and discussed.
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Ethical, Legal, Social and
Cultural Issues and Genetics
Joseph Gigante, Vanderbilt Children's Hospital, Nashville, TN
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Using the Family History To Focus
Anticipatory Guidelines and Screening at Health
Maintenance Visits
Marilyn C. Dumont-Driscoll, University of Florida College of Medicine,
Gainesville, FL
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Genetic Tests for the
Pediatrician: What, When, How and Why
Daniel J. Driscoll, University of Florida College of Medicine,
Gainesville, FL
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Hearing Loss: Resources for
Genetic Information
Teri Lee Turner, Baylor College of Medicine, Houston, TX
8:00am–11:00am
2155—Gender-Variant Youth: The Role of the
Pediatrician
PAS Educational Workshop
Room Laurel, SF Marriott
Leader: Irene Sills, Albany, NY; Co-leader: Arlene Lev
Target Audience: Trainees,
fellows, junior faculty, mid-level faculty, senior faculty,
and community practitioners.
This workshop is an overview of
sexual and gender identity development in children and youth
focusing on understanding the needs of transgender and
transsexual youth. By review of case presentations, attendees
will gain skills and knowledge in how to assist parents of
children with gender variant behavior, children with gender
identity confusion, and adolescents who exhibit cross-gender
behaviors. Ethical considerations in the care of this
population will be presented and discussed. Current standards
for hormonal therapy will be reviewed.
Objectives:
– The participant will
demonstrate an understanding of the developmental
appropriateness of youth with gender variant behavior.
– The participant will prepare to assist children and
adolescents with gender variant behavior and their families.
– The participant will demonstrate an understanding of the
ethical issues in the medical care of transgendered
adolescents.
Format: a) Short didactic
presentation; b) discussions of scenarios that might present
to the pediatrician; c) viewing of a short videotape; and d)
roundtable discussion of ethical issues.
9:45am–11:45am
2200A—Clinical Trials and Observational
Studies
ASPN Workshop
Room 2007, Moscone West
Chairs: Susan L. Furth, Johns Hopkins University, Baltimore, MD; and
Craig Wong, Children's Hospital of New Mexico, Albuquerque, NM
Target Audience: Clinical
investigators and pediatric nephrologists.
This workshop will address
statistical, measurement, ethical and regulatory issues in
clinical research. We will discuss methodological issues in
randomized clinical trials when the sample size is limited, as
often occurs in pediatric studies. We will also address the
measurement of kidney function in large cohort studies.
Finally, we will have an extended discussion on the evolution
of the current regulatory system of clinical research in the
United States. This has evolved from concerns about ethical
issues and protection of subjects to concerns about protection
of the institution through compliance with inflexible
requirements. The session will end with suggestions on what
changes are needed and how to achieve them in the current
regulatory environment.
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Introduction
Catherine Stehman-Breen, Amgen, Thousand Oaks, CA
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Methodologic Issues in Clinical
Trials When Sample Size Is Limited
Tom Greene, The Cleveland Clinic, Cleveland, OH
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Measurement of Glomerular
Filtration Rate in Large Cohort Studies: Design, Conduct
and Analysis
Alvaro Munoz, Bloomberg School of Public Health, Johns Hopkins
University, Baltimore, MD
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The Dysregulation of Research
Norman Fost, University of Wisconsin Medical School, Madison, WI
Supported by an unrestricted educational grant from the
Kidney and Urology Foundation of America, Inc. (KUFA)
11:45am–2:45pm
2408—Ethics in Research
PAS Educational Workshop
Golden Gate Hall C1, SF Marriott
Leader: Douglas Diekema, Seattle,
WA; Co-leader: Susan Albersheim
Target Audience: Trainees,
fellows, junior faculty.
Through presentations, small
group case discussion, and video, participants will explore:
1) the values that guide the ethical conduct of research; 2)
issues related to human subject research; 3) authorship and
publication practices; 4) conflict of interest; 5) scientific
misconduct. This course, designed for trainees and junior
researchers, will fulfill Public Health Service training grant
requirements in research ethics and the American Board of
Pediatrics subspecialty training requirements in clinical
research ethics. In addition, it will partially fulfill the
training requirements in ethics of the Resident Review
Committee of the Accreditation Council for Graduate Medical
Education.
Objectives:
– Discuss the values that guide
ethical research.
– Develop a system to protect human subjects during clinical
trials.
– Assess authorship criteria.
– Determine if a conflict of interest exists and propose a
resolution.
Format: Lecture with question and
answer, small group and large group case discussion and
videotape.
Designed to meet elements of the
core curriculum for pediatric fellowship subspecialty
training.
12:00pm–3:00pm
2505—Embryonic Stem Cells: A Primer for
Clinicians
PAS Mini Course
Room 3014, Moscone West
Chair: Michael T. Longaker, Stanford University, Stanford, CA
Embryonic stem cells offer
incredible promise for treating diseases affecting both
children and adults. This mini course will provide an overview
of stem cells and a basic understanding of how to derive human
embryonic stem cells, recent research and ethical
considerations. After attending this session, attendee will
have a better understanding of: 1) what are embryonic stem
cells; 2) how human embryonic stem cells are derived; 3)
recent progress in human embryonic stem cell research; 4)
ethical considerations in human embryonic stem cells.
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Stem Cells: Embryonic, Adult and
Cancer
Michael T. Longaker, Stanford University, Stanford, CA
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What It Takes Clinically To Get
an Embryonic Stem Cell
Linda C. Giudice, University of California, San Francisco, San
Francisco, CA
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What Can You Do with an Embryonic
Stem Cell in Research
Renee Reijo Pera, University of California, San Francisco, San
Francisco, CA
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Ethical and Oversight
Considerations in Human Embryonic Stem Cell Research
Hank Greely, Stanford University, Stanford, CA
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Panel Discussion
Supported in part by an unrestricted educational grant from
Treuman Katz Center for Pediatric Bioethics - Seattle
Children's Hospital
3:15pm–5:15pm
2772—Teaching Professionalism to Pediatric
Residents: Meeting the ACGME Requirements in the Core
Competencies
PAS Educational Workshop
Yerba Buena Gardens Salon 14, SF Marriott
Leader: Alexander Kon, Sacramento, CA
Target Audience: Junior faculty,
mid-level faculty, and senior faculty.
This workshop will discuss how to
create and implement a residency course in Professionalism to
meet the new ACGME requirements. Participants will learn what
these requirements are and how to identify resources at their
own institution. We will discuss one such course that is used
by the ACGME as an exemplar, and participants will consider
how they can create a similar course. Attendees will become
active participants in the brainstorming and role-playing
sessions, and will discuss their own experiences in attempting
to create and run such courses. Participants will also learn
what resources are available nationally for instructors in
professionalism training.
Objectives:
– Participants will become
familiar with the new ACGME requirements for resident
instruction in professionalism.
– Participants will brainstorm what resources are available
at their own institution to develop a course to meet these
requirements.
– Participants will discuss a course that is recognized as a
national exemplar, and will learn how to implement such a
course at their institution.
– Participants will learn what resources are available
nationally for the development of such courses.
Format: Group discussions,
brainstorming sessions, question-and-answer session, and
role-playing with workshop participant volunteers.
Sunday, April 30
2:00pm–5:00pm
3765—High-Fidelity Pediatric Simulation:
Setting a National Human Performance and Patient Safety
Research and Training Agenda
PAS Educational Workshop
Yerba Buena Gardens Salon 2, SF Marriott
Leader: Louis Halamek, Palo Alto, CA; Co-leaders: Mary Patterson,
Joseph Lopreiato
Target Audience: Trainees,
fellows, junior faculty, and mid-level faculty, senior
faculty.
The goal of this workshop is to
bring together those who are interested in using high fidelity
multidisciplinary pediatric simulation to improve the training
of healthcare professionals and in establishing the evidence
base to support the use of this methodology. This will be an
interactive panel-led session coupled with video presentations
and small breakout group discussions that will allow
participants to identify the elements of a national
simulation-based research and training agenda and a strategy
for implementation of such a plan. Participants will learn
what they can do on the local and national levels to validate
and disseminate its use.
Objectives:
– Define high fidelity
simulation.
– Describe the unique challenges of pediatric simulation.
– Understand why a national research and training agenda is
indicated.
– Develop the major elements of this agenda and develop an
action plan.
Format: I plan to use the three
panelists to lead a facilitated, interactive discussion with
the audience in order to accomplish the workshop objectives
(setting a national agenda and creating an action plan).
2:00pm–5:00pm
3770—Supporting Physicians Through the
Stress of Malpractice Litigation
PAS Educational Workshop
Golden Gate Hall C3, SF Marriott
Leader: Rita Meek, Wilmington, DE; Co-leaders: Linda Pilla, Wesley
Bowman and Phyllis Rosenbaum
Target Audience: Trainees,
fellows and junior, mid-level and senior faculty.
This workshop will provide
information about malpractice litigation as well as how to
develop a "peer support" process utilizing physician
mentors who have had prior experience with malpractice
litigation. We will present information about the stages of
the litigation process as well as common reactions that many
physicians experience. We will discuss how to train physician
mentors in "active listening" skills and
confidentiality and boundary issues. In this experiential
workshop, participants will practice "active listening
skills" and role-play being a physician defendant and a
physician mentor. Handouts and literature review will be
provided.
Objectives:
– Improved active listening
skills
– Understand the stages of malpractice litigation process
– Understand physicians' reactions to stress
– Understand how to train physician mentors
Format: Roundtable discussion,
question-and-answer period and interactive dialogue.
2:00pm–5:00pm
3783—Ethics
APA Special Interest Group
Room Pacific Suite A, SF Marriott
Chair: Christine McHenry, christine.mchenry@cchmc.org.
Monday, May 1
10:15am–12:15pm
4320A—New Frontiers in Reproductive Science
LWPES Topic Symposium
Room 3001, Moscone West
Chairs: Ram K. Menon, University of Michigan, Ann Arbor, MI; and Henry
Anhalt, Saint Barnabas Medical Center, Livingston, NJ
Target Audience:
Endocrinologists, geneticists, developmental biologists and
adolescent medicine.
The regulation of puberty remains
one of the greatest mysteries of medicine. A child is born
with all of the necessary components to undergo puberty at
birth but this process is quiescent until puberty occurs. The
attendee will learn the newest information on the biological
regulators of puberty.
In addition, the attendee will be
exposed to newer techniques available for preservation of
fertility in a variety of different pathological states.
Discussion will include the cryopreservation of the
pre-pubertal ovary.
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Kiss-1 and GPR54 as New Players
in Gonadotropin Regulation and Puberty
Ursula Kaiser, Brigham and Women's Hospital, Boston, MA
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Modern Preservation of Fertility
Kutluk Oktay, Weill Medical College of Cornell University, New York, NY
12:00pm–1:00pm
4420A—Bioethics Interest Group
Club
Room 2006, Moscone West
Chair: Susan Albersheim, British Columbia’s Children’s Hospital,
University of British Columbia, Vancouver, Canada
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Panel: Should All Newborns Be
Screened for HIV?
Ram Yogev, Children's Memorial Hospital, Northwestern University,
Chicago, IL
Ellen Wright Clayton, Vanderbilt
University, Nashville, TN
Lainie Friedman Ross, University of Chicago, MacLean
Center for Clinical Medical Ethics, Chicago, IL
Contact for information:
Susan Albersheim, M.D.
British Columbia's Children's Hospital
Phone: 604-875-2135
Email: salbersheim@ce.bc.ca
12:15pm–1:15pm
4470—The National Children's Study: Status
and Future Plans
PAS/PPC Special Symposium
Room 3010-3012, Moscone West
Chair: Elena Fuentes-Afflick, University of California, San Francisco,
CA
Target Audience: Practicing
pediatricians, academic child health professionals,
researchers, administrators and policymakers who are
interested in child health across the lifespan. Professionals
interested in the impact of environmental factors on health
outcomes will also be interested.
This special symposium will
present an update on the National Children's Study, which
recently selected 7 vanguard centers and is prepared to begin
recruitment of subjects. However, the President's budget
proposal allocated no further funding and stated that the
study would be terminated at the end of the current fiscal
year. The panel presenters will discuss the current budgetary
outlook, status of the study, options to implement the study
and respond to questions from the audience.
Panelists
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Elena Fuentes-Afflick, University of California, San Francisco, CA
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Duane Alexander, Director,
National Institute of Child Health and Human Development,
National Institutes of Health, Bethesda, MD
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Peter C. Scheidt, Director,
National Children's Study, National Institute of Child
Health and Human Development, National Institutes of
Health, Bethesda, MD
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Alan R. Fleischman, Chair,
National Children's Study Federal Advisory Committee, New
York Academy of Medicine, New York and National Institutes
of Health, Bethesda, MD
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David J. Schonfeld, Member,
National Children's Study Federal Advisory Committee and
Chair, AAP Committee on Research, Cincinnati, OH
Sponsored jointly by
the Public Policy Council and the Pediatric Academic Societies
Tuesday, May 2
8:00am–10:00am
5100—Ethical Issues in Housing Health
Hazard Research Involving Children
PAS Topic Symposium
Room 2003-2005, Moscone West
Chair: Bernard Lo, University of California San Francisco, San
Francisco, CA
Target Audience: A broad
pediatric audience with the goal of promoting understanding of
ethical issues in conducting community-based research,
especially housing hazard research.
Children’s homes may contain
hazards that can cause lead toxicity, trigger asthma or result
in serious injuries or poisoning. A 2001 court decision, in
Grimes versus Kennedy Krieger Institute, highlighted ethical
issues in housing-related research and led to substantial
controversy and confusion. Many ethical dilemmas occur because
research participants are often poor, members of a minority
group and have few affordable housing options. Moreover,
carrying out research in the home raises unique ethical
issues. A forthcoming report from National Academies of
Science (NAS) will offer recommendations for conducting
research on this topic. This panel will present these NAS
recommendations and discuss how they might be applied to
specific projects in housing research involving children.
Specific issues to be discussed include innovations in
research design and informed consent, responding to risks
observed in the home, the role of researchers and IRBs and
community involvement in research. Audience participation will
be encouraged.
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Recommendations from the National
Academies of Science
Bernard Lo, University of California San Francisco, San Francisco, CA
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Protecting Vulnerable Research
Participants While Allowing Valuable Research To Be
Carried Out
Alan R. Fleischman, Chair, National Children's Study Federal Advisory
Committee, New York Academy of Medicine, New York and
National Institutes of Health, Bethesda,
MD
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Innovations in Study Design and
Informed Consent in Housing Hazard Research Involving
Children
Bruce P. Lanphear, Cincinnati Children's Environmental Health Center,
Cincinnati Children’s Hospital Medical Center,
Cincinnati, OH
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Resolving Ethical Dilemmas in
Housing Hazard Research Through Community Participation
Brenda Eskenazi, University of California Berkeley, Berkeley CA
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Discussion
8:00am–10:00am
5152—Clinical Bioethics
PAS Platform Session
Room 3001, Moscone West
Chairs: Joel Frader and Lainie F. Ross
8:30am–9:45am
5200A—The Challenge of Diagnosis and
Outcome in Intersex
LWPES State of the Art Plenary
Room 3007-3011, Moscone West
Chair: Lynne Levitsky, Massachusetts General Hospital, Boston, MA
Target Audience: Geneticists,
endocrinologists and general pediatricians.
The attendee will be presented
with an overview of intersex and then the challenges of
diagnosis and outcome will be addressed. Many previous
assumptions about outcome have proven to be false. This should
prove to be an exciting talk about a highly controversial
topic affecting pediatric endocrinologists and geneticists.
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The Challenge of Diagnosis and
Outcome in Intersex
Ieuan Hughes, University of Cambridge, Cambridge, UK
8:45am–11:45am
5216—How To Change the World in an Hour a
Month: Skills for Effective and Efficient Leadership in
Community Health and Child Advocacy
PAS Educational Workshop
Yerba Buena Gardens Salon 4, SF Marriott
Leader: Andy Aligne, Rochester, NY; Co-leaders: Laura Jean Shipley,
Jeffrey Kaczorowski, Danielle Thomas-Taylor
Target Audience: Trainees,
fellows, junior faculty, mid-level faculty, senior faculty,
and community practitioners.
This workshop will enable
attendees to leverage their time more effectively when working
outside the clinical setting to improve child health at the
community level. Facilitated group exercises will improve
skills in some or all of the following: time management,
teamwork, coping with change, getting involved with
community-based organizations, cultural observation, speaking
to the media, project planning and evidence-based community
health.
Objectives:
– Time management
– Speaking to the media
– Project planning
– Evidence-based community health
Format: Group exercises and group
problem solving.
10:15am–11:45am
5405—Newborn Screening: The Coming
Revolution
PAS State of the Art Plenary
Room 3001, Moscone West
Chair: Alex R. Kemper, University of Michigan, Ann Arbor, MI
Target Audience: General
pediatricians, subspecialists involved with newborn screening,
for including neonatologists, endocrinologists, hematologists
and geneticists.
Newborn screening has resulted in
dramatic improvements in the morbidity and mortality of
inherited disorders. Recent laboratory developments have
dramatically increased the number of conditions that can be
detected in early infancy. Expanding the list of conditions
has lead to unique challenges for pediatric practices and
public health systems. This symposium will explore these new
and emerging challenges.
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Overview
Alex R. Kemper, University of Michigan, Ann Arbor, MI
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New Technologies for Newborn
Screening
Edward R.B. McCabe, David Geffen School of Medicine at UCLA, Mattel
Children's Hospital, Los Angeles, CA
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Meeting the Needs for
Confirmation, Counseling and Treatment
R. Rodney Howell, Miller School of Medicine at the University of Miami,
Miami, FL
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"Treatment" Versus
"Benefit" in Evaluating the Desirability of
Expanded Newborn Screening
Don Bailey, University of North Carolina at Chapel Hill, Chapel Hill,
NC
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Ethical Issues That Must Be
Addressed in an Expanded Newborn Screening Program
Ellen Wright Clayton, Vanderbilt University, Nashville, TN
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Summary Comments
Michele Puryear, Maternal and Child Health Bureau, Health Resources
& Services Administration, Rockville, MD
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Discussion
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