Researchers at the Icahn School of Medicine at Mount Sinai are seeking disability advocates to participate in a survey about the current state of genetic counseling for the disability community. The goal of this survey is to help understand gaps in knowledge among genetic counselors regarding life with disability and to evaluate educational opportunities, such as exposure of genetic counseling students to the disability community, that could be implemented to improve genetic counseling programs.
Participants will be required to provide consent to take part in the research study and then complete a ~15-minute survey. Qualifying respondents will then be invited to schedule a ~30-minute follow-up interview. All interviews will take place before December 2021 and will be recorded using a HIPAA-compliant Zoom. Interviews will be transcribed manually, with files stored using the REDCap web application. Once each recording is fully transcribed, the original recording will be deleted. Data will be stored in Mount Sinai servers for up to six years.
To be eligible, individuals must meet the following criteria:
- Has a genetic component to their disability (Parents of individuals with disabilities may be considered for interviews)
- Must be are affiliated with and active in at least 1 advocacy group related to their genetic disorder or disability
- Has a reasonable knowledge of the genetic counseling profession
- May have worked with a genetic counseling program as an advocate for their disability or as faculty
- Willing to provide informed consent and follow study procedures
Individuals may not be eligible to participate in the following cases:
- Does not have a genetic component to his/her disability
- Is unable to provide consent
- Does not allow recording
Interested participants can reach out to the study coordinator Dena Winchester by email at dena.winchester@icahn.mssm.edu.
