The current Community Genetics Program (NSW) provides year 11 students at a number of Sydney schools the opportunity to undergo genetic carrier screening. They will also be offered the chance to take part in the OneScreen study. OneScreen collections will take place at the same time as the current NSW Community Genetics Program.
Students take part in an educational session on several inherited conditions that are relevant to the Jewish community and which can be passed onto their children.
Information about the Community Genetics program and the OneScreen Community Genomics study will be given to students to discuss with their parents and family. Samples will be collected at the schools after the education session.
Comparison of the Community Genetics Program and the OneScreen research study:
|
|
Community Genetics program |
OneScreen research study |
|
Offered to |
Year 11 students |
Year 11 students |
|
Minimum age |
16 years or over |
16 years or over |
|
Voluntary? |
Yes |
Yes |
|
Also available at |
Wolper Jewish Hospital |
Wolper Jewish Hospital (TBC) |
|
Number of conditions tested |
9 |
~>2,000 |
|
Cost |
Free for students |
Free of charge for all participants |
|
Sample collection |
Saliva (Buccal swab in 2020) |
Buccal (Cheek) swab |
|
Results reported |
Yes, via NSW Health |
No. As this is a research study, results will not be returned |
|
Who will benefit |
The tested individual will benefit directly |
The community will benefit from the improved design of future genetic screening programs |
What happens to the samples?
DNA will be extracted from the cheek samples and decoded by a modern DNA sequencing machine. Researchers will search for variants in genes associated with known genetic conditions.
Sequencing for the OneScreen study will be performed in a separate laboratory to the current Community Genetics Program. If the participant agrees, results from this research study can be compared with results and demographic data collected during the routine Community Genetics Program to validate the new process. This de-identified data will then be pooled for analysis. No personal information will be stored with genetic information.
What will the research do?
This research will inform the design of future genetic screening programs. The study will provide a better understanding of how often a wide range of genetic variations occur in the community. It will also provide information about the relative benefits of including different genetic conditions in screening tests. Tools developed throughout the study will establish the infrastructure for future screening programs. Finally, this study will provide insights into student and community awareness, understanding and views of genetic screening to inform future community discussions.
