In order to make progress toward ensuring all future genetic counselors possess the necessary skills to improve the quality of services provided to families and individuals, researchers at the University of Texas Health Sciences Center in Houston are seeking participants for an online survey. Participants will be asked to share their opinion in order to help identify content that should be considered for the standardization of disability awareness curriculum across genetic counseling graduate programs.
Who are genetic counselors?
Genetic counselors are medical professionals who have advanced training in medical genetics and counseling to interpret genetic test results and to guide and support patients seeking more information about such things as:
- How inherited diseases and conditions might affect them or their families
- How family and medical histories may impact the chance of disease occurrence or recurrence
- Which genetic tests may or may not be right
- What those tests may or may not tell and how to make the most informed choices about healthcare conditions
About the survey
Participants will spend approximately 15 minutes answering questions about what they think should be included in genetic counseling students’ disability awareness education.
Participating in the survey
Participants must be 18 years or older. The researchers are recruiting individuals diagnosed with a neuromuscular disease and parents, relatives, or caregivers of a person diagnosed with a neuromuscular disease to participate in an online survey. You do not need to have experience with a genetic counselor in order to participate.
To access the study, visit https://uthtmc.az1.qualtrics.com/jfe/form/SV_1KYRQevvyjkYWcl. To learn more about the study, contact the investigators: Lauren Douglas at firstname.lastname@example.org or Chelsea Wagner, MS, CGC, at Chelsea.email@example.com.