Title: 'Beyond DNA and Heredity, How Can Genetics Professionals Aid the EHDI System'
Track: 1 - EHDI Program Enhancement
Keyword(s): support, abnormal screening, anxiety, uncertainty
Learning Objectives:
  1. Understand a successful way to convey information in the context of uncertainty
  2. Understand the concept of non-directive counseling and its efficacy in presenting complex information
  3. Able to use strategies learned from genetic counselors to support families during the screening and diagnostic work-up.


There is a presumption that most women have positive feelings about screening, expecting that it will confirm the wellbeing of their child. However, when the screening identifies changes of unclear significance, parents have fears and difficult choices to deal with (Ahman et al. 2010). This has been found true in research regarding prenatal screening, and could be applied to the EHDI system. Genetic counselors have been working with families for decades in the realm of prenatal diagnosis and biochemical newborn screening and can aid in understanding the process of conveying uncertain as well as abnormal results. Mitchell (2004) noted that no matter how prepared a family is for a prenatal ultrasound, when anything unusual is noted, there is a “rupture in the taken-for-granted nature of the world” (231). This can be found in the newborn hearing screening (EHDI) system. Fischer (2012) as well as others have noted that prenatal screening results, with accompanying uncertainty and anxiety, need a flexible approach and individualized support through the process. Eliminating anxiety and anguish are impossible, but genetic counselors have training that allows them to support the families through this process, including training to avoid jargon, a key barrier to effective communication, especially when the topic is as complicated as the implications of positive screening results (Farrell et al. 2008). Case studies will be used to provide examples of non-directive counseling that is the basis of all genetic counseling. The purpose of this presentation is to offer strategies to providers engaged in newborn hearing screening based on lessons learned from genetic counselors. This includes tips on providing complex medical information in an empathetic manner. These evidenced-based practical studies will assist providers in supporting families and easing their anxiety upon receipt of a failed newborn hearing screen.
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Robin Godshalk - Primary Presenter,Author
Atlantic Healthcare
     Credentials: MS, MHA, CGC
     Other Affiliations: Jacobs Levy Equity Management Personalized Genomic Medicine Program
      Genetic counselor with 15 years of experience. Coordinate intake, counseling and result review of preconception, pediatric and adult patients. Active member of the craniofacial team. Proud mother of a son with bilateral hearing loss. President of the Board of Directors of Hands & Voices of New Jersey. Professional/Parent Member of National Initiative for Children's Healthcare Quality learning collaborative striving to improve the quality and timeliness of care for newborns with hearing loss through the use and application of quality improvement methods. Professional/Parent Member of Community of Learners for the National Center for Cultural Competence and the National Center for Hearing Assessment and Management. Member of the New Jersey team involved in providing leadership to advance and sustain cultural and linguistic competence within the integrated system of services and supports for children and youth with special health care needs and their families

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.