Canavan Disease, Familial Dysautonomia, Tay Sachs Disease
Conditions
Keywords
Genetic Counseling, Technology, Ashkenazi Jewish, Carrier screening
Brief summary
The investigators have developed a new website to educate persons of Ashkenazi Jewish ancestry about their increased risk for having children with certain genetic conditions, and the genetic testing the investigators offer. This study aims to pilot the website to find out whether it is effective and to learn what the investigators can improve. Participants in the study will be assigned to one of two conditions: 1. Standard in-person genetic counselling session to learn about inheritance of Ashkenazi Jewish genetic conditions and genetic testing. Participants will fill out two short questionnaires, one before and one after the genetic counselling session. They will then be given a requisition form to undergo blood draw for genetic testing at the Montreal General Hospital test centre. 2. Use of a web-based pre-test genetic counselling tool to learn about inheritance of Ashkenazi Jewish genetic conditions and genetic testing. They will fill out two short questionnaires, one before, and one after using the web-based tool. They will then be electronically sent a requisition form to undergo blood draw for genetic testing at the Montreal General Hospital test centre. In both conditions, genetic test results will be communicated by telephone once they are available. Participants' genetic test results will not be used in any way for the study.
Detailed description
In Montreal, individuals of Ashkenazi Jewish descent are eligible to have carrier screening for three genetic conditions: Tay-Sachs disease, Canavan disease, and familial dysautonomia. The investigators have developed a new website to educate persons of Ashkenazi Jewish ancestry about their increased risk for having children with these genetic conditions, and the genetic testing the investigators offer. This study aims to pilot the website to find out whether it is effective and to learn what the investigators can improve. Specifically, the investigators will measure knowledge acquisition, level of anxiety, and degree of satisfaction with their experience. Participants in the study will be assigned to one of two conditions: 1. Standard in-person genetic counselling session to learn about inheritance of Ashkenazi Jewish genetic conditions and genetic testing. Participants will fill out two short questionnaires, one before and one after the genetic counselling session. These questionnaires assess demographic information, knowledge regarding the three genetic conditions listed above, feelings and anxiety levels, e-health literacy, and overall satisfaction. They will then be given a requisition form to undergo blood draw for genetic testing at the Montreal General Hospital test centre. 2. Use of a web-based pre-test genetic counselling tool to learn about inheritance of Ashkenazi Jewish genetic conditions and genetic testing. They will fill out two short questionnaires, one before, and one after using the web-based tool. These questionnaires are similar to those in the condition above, except there will also be questions regarding the utility of the web-based tool and ways to improve the tool. Participants will then be electronically sent a requisition form to undergo blood draw for genetic testing at the Montreal General Hospital test centre. In both conditions, genetic test results will be communicated by telephone once they are available. Participants' genetic test results will not be used in any way for the study.
Interventions
OTHEROnline pre-test genetic education tool
See Arm Descriptions above.
Sponsors
McGill University Health Centre/Research Institute of the McGill University Health Centre
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
HEALTH_SERVICES_RESEARCH
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
* At least one grandparent of Ashkenazi Jewish descent * Access to computer at home and computer literate
Exclusion criteria
* Participant or participant's partner is pregnant at time of study * Family history of an Ashkenazi Jewish genetic condition
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Knowledge of Ashkenazi Jewish genetic conditions | 1 hour | Evaluated by questionnaire developed specifically for this study. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Patient anxiety | 1 hour | Evaluated by 6-item short form state trait anxiety inventory (Becker and Marteau 1992) |
| Satisfaction with web-based/in-person genetic counselling | 1 hour | Assessed by questionnaire, developed from pre-existing genetic counselling research (Shiloh et al. 1990; Yip et al. 2003) |
| Perceived risk of having a child with an Ashkenazi Jewish genetic condition | 1 hour | Evaluated by questionnaire developed specifically for this study. |
Countries
Canada
Outcome results
None listed