Woman with Turner syndrome reading a book.

Schedule: May 13, 2022

Learn about the current status of patient education about disabilities and develop goals for next decade to support families learning about genetic conditions.

  • 8-8:30am: Continental Breakfast and welcome
  • 8:30-9am: Welcome and Message by Alex Pender, Joseph P. Kennedy, Jr. Foundation Trustee, and Mitchell Levitz
  • 9-10:45am: Presentations by speakers:
    • Prenatal treatments and the NIH-supported INCLUDE project: Dr. Diana Bianchi
    • Overview of the current state of education about disabilities for expectant parents, review collaborative accomplishments between the medical and advocacy communities, and apply the health equity lens: Stephanie Meredith, MA
    • Review of laws and regulations pertaining to the provision of information following prenatal screening: Mark Leach, MS, JD
    • Review of the medical organization guidelines regarding prenatal education about genetic conditions: Dr. Brian Skotko and Katie Stoll, MS, CGC
    • Review of education initiatives for medical providers delivering a diagnosis: Angela Trepanier, MS, CGC
    • Review of federal reports/grants pertaining to prenatal education about genetic conditions: Dr. Kara Ayers
  • 10:45-11am: Break
  • 11-11:45am: Discussion Topic Table #1. Divide into tables where each table will be focused on one of the following 8 topics. Each table is interdisciplinary and will focus on identifying at least the top 3 most critical problems to solve for each discussion topic.
    Directions: Your #1 and #2 table topics are listed on your name tags and have been assigned based on your preferences listed in the Prenatal Summit survey and the interdisciplinary composition of the table. Each table will have a table sign, a community conversation guide, a pre-assigned table leader, and a notetaker
    • Public policy and legislation such as Down Syndrome/Genetic Condition Information Acts, Wrongful Birth and Wrongful Life
    • Evaluating disability representation and education in organizational policies/guidelines
    • Researching to improve the diagnosis experience and provision of information about conditions
    • Assessing ethical practices/disability studies perspective regarding prenatal screening and disability
    • Addressing ableism, stigma, and the needs of populations with multiple vulnerabilities: socioeconomic, racial, etc. when administering prenatal testing
    • Training for healthcare professionals and students about genetic conditions and disability equity
    • Developing and disseminating patient education tools about conditions
    • Ensuring best practices for delivering a diagnosis
  • 11:45-12:30am: Discussion Topic Table #2. Discussion Table #2. Each table should be interdisciplinary and should focus on identifying at least the top 3 most critical problems to solve for each discussion topic.
  • 12:30-2:00pm: Working lunch while table leaders debrief the entire group on the outcomes of the discussions and then entire group votes to identify most critical priorities to solve in each area.
  • 1:45-2pm: Bio Break
  • 2-3pm: Divide into 9 tables again. Return to Topic Table #1. Identify at least 3 solutions, strategies and action steps to solve challenges.
  • 3-4:00pm: Report out the solution ideas for each group and document the results. Led by Dr. Marsha Michie.