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Genetic Testing
Considerations and Resources to Navigate informed Decision Making for Parents
NEW! Resources from Hands & Voices
Welcome to the Hands & Voices resource page for information about Genetic Testing. The resources here have been created and collected for parents of children who are deaf/hard of hearing as you are navigating the decision to pursue genetic testing.
Hands & Voices believes in the motto, “What works for your child is what makes the choice right.”TM This is true when it comes to the decisions you will make regarding genetic testing for your child.
A Parent’s Guide to Exploring Genetic Testing: Making Informed Family Decisions
This guide was developed by Hands & Voices, with input from hearing parents, deaf parents, professionals, genetic counselors, and deaf/hard of hearing individuals and community members. It is our hope that this will support your efforts in your journey of raising your child who is deaf/hard of hearing.
Questions to ask your Genetics Counselor
This downloadable document can be used to help you think about the questions you may want to ask a genetics counselor, your physician, audiologist, or ENT.
Download this Infographic about Genetic Testing Considerations
Check out this new information at the H&V Virtual Waiting room
PowerPoint Presentation from the 2025 National EHDI Conference, titled:
The Genesis of Resources Development and Partnerships: Genetic Testing Information for Families
Coming this Fall, 2025!
Look for new resources for professionals in your work to support families.
Where to Learn More about Genetic Testing
- A Parent’s Guide to Genetics and Hearing Loss: https://www.cdc.gov/hearing-loss-children-guide/parents-guide-genetics/index.html
- GenomeConnect Webinar - Genetics 101 and How to Read Your Lab Report: https://www.youtube.com/watch?v=EL1N0x4tqMY and https://www.youtube.com/watch?v=01sfQLcFVuc
- What is Genetic and Genome Testing: https://www.ndcs.org.uk/
- Why are genetics important for children with hearing loss?
Video (3 min) from Michigan Medicine, captioned with transcript and auto translated into many languages, included. https://www.youtube.com/watch?v=N2HAnxOCun8 - H&V infographic on Family and Child Genetic Testing Considerations https://handsandvoices.org/resources/genetic-testing/infographic-3-18.pdf
- Katharine Press Callahan, Rebecca Mueller, Karen Crew, Kyle Brothers, David Munson, Steven Joffe, Chris Feudtner, Frequency and reasons that parents decline genetic testing for critically ill neonates, Genetics in Medicine Open, Vol 2, 2024, 2024, 101896, ISSN 2949-7744, https://doi.org/10.1016/j.gimo.2024.101896
More Information about Clinical Trials/Gene Therapy
Read our article on the HV Library site:
Genetics, Clinical Trials, and Gene Therapy - Family Decision Making
Other Links:
Hands & Voices would like to thank Lilly and Sensorion for the opportunity to help us create these resources for families and professionals on this page, and to Lilly and Regeneron for their continued support at our H&V Leadership Conference
