On May 13, 2022, the National Center for Prenatal and Postnatal Resources, housed at the UK Human Development Institute hosted the Prenatal Disability Education Summit. This event was sponsored by the Joseph P. Kennedy, Jr. Foundation(JPKF) and brought together national medical, advocacy, bioethics, industry, and policy leaders to collaboratively identify current challenges and potential solutions in the ethical provision of prenatal screening for disabilities.
Presentations at Summit:
Report of solutions proposed by topic tables:
Leaders from five national obstetrics, genetics, and pediatrics organizations met alongside bioethics experts, industry representatives, academics in disability studies, and leaders from federal agencies and 12 national disability advocacy organizations representing multiple conditions that can be diagnosed prenatally. The event was held in Baltimore at the Johns Hopkins Medical Campus.
JPKF Trustee, Alex Pender, says, “The Joseph P. Kennedy, Jr. Foundation (JPKF) is thrilled to sponsor and be a part of the Prenatal Disability and Education Summit. For more than 75 years, JPKF has pushed for progress, inclusion, and respect for people with intellectual disabilities. The Foundation has helped inspire and advance a wave of landmark federal legislation providing support and programs for the disability community, including the Community Mental Health Act, the Individuals with Disabilities Education Act, and the Americans with Disabilities Act. This summit is an important step forward to advance the way in which women and families are given a medical diagnosis at the early stages of pregnancy and will be pivotal in how doctors care for the women and children these practices will impact most.”Alex Pender, JPKF Trustee
Stephanie Meredith, the event organizer and the Director of the National Center for Prenatal and Postnatal Resources says this event will be the first of its kind to bring together such a diverse coalition of stakeholders to discuss strategies for making sure that patients undergoing prenatal screening get the support and information they need when learning about disabilities.
Meredith shares that, “Research shows that patients continue to struggle to get information about disabilities that meets their needs at that vulnerable moment when receiving prenatal screening results. They want to know about the medical issues and genetics, but they also want to know what life is like for people living with these conditions and their families. This is particularly vital because people with disabilities are part of a historically marginalized population, so we must make sure discussions about disabilities are based on accurate and up-to-date information without being clouded by stereotypes. And the stakes are high because patients can experience lasting trauma when they don’t receive the information and support that they need.”
Meredith adds, “As prenatal screening efforts increase, we are heading into a looming public health crisis of genetic information without a sufficient infrastructure for patient education and support. That means the work of this interdisciplinary team is essential to ensuring that all stakeholders are working together to meet the needs of vulnerable families and to provide clinicians accurate and up-to-date information and training about disabilities.”Stephanie Meredith, Director National Center for Prenatal and Postnatal Resources
The Summit did the following:
- Assessed the current state of education about disabilities for expectant parents undergoing prenatal screening.
- Reviewed collaborative accomplishments since the last Down Syndrome Consensus Meeting in 2008.
- Established collaborative goals in the areas of public policy, organizational policies/guidelines, research, and ethical practices for the next decade to ensure that families receive accurate, up-to-date, and balanced information, resources, healthcare, and support they need following a diagnosis or screening results and to help families and clinicians better understand a more up-to-date vision of people living with disabilities.
- Discussed best practices for building relationships between the disability advocacy and medical communities and discuss strategies for the education and training of medical and genetics professionals to better understand current life outcomes for people with disabilities.
- Produced a directory of stakeholders who want to continue to work collaboratively on disability education in the prenatal setting
The primary sponsor of the event is the Joseph P. Kennedy, Jr. Foundation, and other vital sponsors include The National Parents First Call Center, a program of the Massachusetts Down Syndrome Congress, Down Syndrome Diagnosis Network, The National Down Syndrome Society, The Trisomy 18 Foundation, Sunflower Neonatology Associates, Case Western Department of Bioethics, and Genetic Support Foundation with support from the Kennedy Krieger Institute at the Johns Hopkins Medical Campus, and the Center for Dignity in Healthcare for People with Disabilities.
See speaker slides: https://www.dropbox.com/sh/2r3e6hjtk56y9o1/AAA8fEXhyY6RAhdnwBV5olCLa?dl=0