2026 Early Hearing Detection & Intervention Conference
March 15-17, 2026 • Jacksonville, FL
3/11/2025 | 9:40 AM - 10:10 AM | The Genesis of Resource Development and Partnerships: Genetic Educational Resources for Families | 319
The Genesis of Resource Development and Partnerships: Genetic Educational Resources for Families
The goal of ensuring informed decision making by families is at the heart of the creation, development, and dissemination of information for families. As organizations and agencies seek to develop resources, partnerships are essential to create balanced information. This session will particularly explore the complex interplay between genetic testing for deaf and hard of hearing children and the family support systems that are integral to their development. As we integrate healthcare and family support considerations, this session will discuss the ethical, emotional, and practical considerations surrounding genetic testing for Deaf and Hard of Hearing children from a Family-Based Organizational lens. Understanding the impact of early genetic identification on family dynamics, decision-making, and long-term support strategies will be shared.
Additionally, as the dynamics of the role of Pharmaceutical Companies in EHDI emerges, practical resources will be shared for Patient/Parent Advocacy Organizations and others on the role they play in emerging conversations in Deafness. This includes information from Principles for interactions with biopharmaceutical companies: the development of guidelines for patient advocacy organization in the field of rare diseases. (Stein, et al. Orphanet Journal of Rare Diseases (2018) 13:18 DOI 10.1186/s13023-018-0761-02) These Guidelines recommend best practices and standards for interactions between patient advocacy organizations and industry that address topics such as the role of parent advocacy organizations; identification and engagement with companies in a transparent manner; patient engagement and patient privacy; financial contributions; clinical trial communication and support.
- 1. Understand the Ethical and Emotional Considerations of Genetic Testing in Deaf and Hard of Hearing Children.
- 2. Analyze the Impact of Early Genetic Identification on Family Decision-Making and Support Systems
- 3. Apply Best Practices for Parent Advocacy Organizations in Navigating Relationships with Pharmaceutical Companies
Presentation:
3545975_18264JanetDesGeorges.pdf
Handouts:
Handout is not Available
Transcripts:
CART transcripts are NOT YET available, but will be posted shortly after the conference
Presenters/Authors
Janet DesGeorges
(Primary Presenter,Author), Hands & Voices, Headquarters, janet@handsandvoices.org;
Janet DesGeorges lives in Boulder, Colorado and is Executive Director of Hands & Voices Headquarters and the P.I. for the FL3 Center. Janet has presented to groups worldwide about the experiences of families as they journey through life with a child with deafness or hearing loss. Ms. DesGeorges received a program certificate from the MCH Public Health Leadership Institute in 2011 at the University of North Carolina – Chapel Hill.
As an EHDI Systems advocate, Janet believes in the principles and guiding philosophies of Hands & Voices towards a parent-driven, professionally-collaborative approach when supporting families in the early years. Her areas of interest include Leadership Development for parents who participate in systemic improvement; Deaf Education Reform and Improvement; Children’s Safety and Success(preventing child abuse and neglect); Early Hearing Detection and Intervention Systems; and Parent/Professional partnerships in Quality Improvement processes.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.