New Prenatal Screening Recommendations and Free CEU Credits for Genetic Counselors
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2022 Newsletter
New Journal Publication!
Recommendations to Improve the
Patient Experience and Avoid Bias
When Prenatal Screening/Testing
For the past three years, the interdisciplinary prenatal subcommittee of the Center for Dignity in Healthcare for People with Disabilities has been working on recommendations for health professionals and medical/genetics organizations, advocacy organizations, government agencies, commercial labs, and other stakeholders to improve the patient experience and avoid bias when administering prenatal screening/testing. These recommendations have been recently published in the Disability and Health Journal. You can access the article for free with this link through January 19, 2023!
The prenatal subcommittee included health professionals from various disciplines, advocacy organization leaders, bioethicists, policy experts, scholars, and professionals with disabilities.
First 70 registrants receive 0.5 FREE CEUs upon completion of this evidence-based online course courtesy of the National Down Syndrome Society!
You can register for this course at https://www.hdilearning.org/product/pht-206/. The cost of the CEU credits for the first 70 people to register and complete the course will be generously covered by the National Down Syndrome Society. Afterwards, the associated cost is $50 per person.
We hope this is a valuable resource for clinicians who want to strengthen their understanding of disability issues, the history of disability rights, and best practices for communicating about a prenatal or postnatal diagnosis.
The National Society of Genetic Counselors (NSGC) has authorized Lettercase National Center for Prenatal and Postnatal Resources to offer up to 0.5 CEUs or 5 Category 1 contact hours for the activity Understanding Disability and Best Practices for Communicating a Diagnosis. The American Board of Genetic Counseling (ABGC) will accept CEUs earned at this program for the purposes of genetic counselor certification and recertification.
The overarching purpose is to give genetic counselors tools to assess the administration of genetic screening and testing in the context of the disability rights movement, to recognize what constitutes balanced information, and to promote culturally competent practice as well as client-centered, informed, non- coercive and value-based decision-making. These objectives map to the Accreditation Council of Genetic Counseling (ACGC) Practiced Based Competencies 2a, 11a &b, 13a) (2019), as well as the NSGC Code of Ethics (I1, II4&5, IV4) (2017).
This online module can be completed at your own pace and includes the following features:
- online lessons
- instructional videos
- video podcasts
- reflection activities
- links to additional helpful resources
Course Developers:
- Dr. Harold Kleinert, EdD
- Stephanie Meredith, MA
- Supervisor: Angela Trepanier, MS, CGC
Special thanks to our reviewers: Angela Trepanier, MS, CGC, at Wayne State University; Dr. Brian Skotko, MD, MPP, from the Massachusetts General Hospital Down Syndrome Program; Blair Stevens, MS, CGC, from the University of Texas Houston; Cori Feist, MS, CGC, from Oregon Health & Science University; Kim Baich from the Down Syndrome Association of Central Ohio; and Stephanie Thompson from the National Down Syndrome Adoption Network.
You can also access our free resources for expectant parents on our Lettercase resources webpage. Get the materials online, in print, or in our app for tablets.
Prenatal Summit Report
In May 2022, the Joseph P. Kennedy, Jr. Foundation sponsored a Prenatal Disability Education Summit at Kennedy Krieger Institute at the Johns Hopkins Medical Campus in Baltimore Maryland. This event included about 60 invited stakeholders, representing the medical, advocacy, and public policy communities, to discuss the future of prenatal education about disabilities. We also created a report that outlined current challenges and solutions moving forward that we could work on collaboratively.
Next Resource: Spina Bifida
We currently offer resources about Down syndrome, Turner syndrome, Klinefelter syndrome, Prader-Willi syndrome, and Jacobsen syndrome. All are created with input from national medical, genetics, and advocacy organizations and cover the topics most important to patient receiving a prenatal diagnosis. Thanks to the Joseph P. Kennedy, Jr., Foundation, the next on the list in 2023 will be Spina Bifida!
Disseminating Patient Centered Outcomes Research Results about Disabilities to Black and Hispanic New and Expectant Parents
The Lettercase National Center for Prenatal and Postnatal Resources at the University of Kentucky’s Human Development Institute (HDI) has been awarded a Eugene Washington PCORI Engagement Award by the Patient-Centered Outreach Research Institute (PCORI). Beginning in July 2022, the award will be distributed over the next two years to convene meetings with families, advocacy organization leaders, health equity experts, and health professionals to determine and share recommendations for disseminating research to new and expectant Black and Hispanic parents of children with Down syndrome.
In Year 2 of the grant (2023-2024), we will be developing a white paper and online learning module to inform health professionals about the recommended strategies to reach historically underserved communities. We look forward to keeping you posted!
