OneScreen is a research study to explore the use of advanced DNA technologies to improve carrier screening in the community. Students in Year 11 at participating schools and people involved in the Community Screening program through Wolper Jewish Hospital can participate. However, no results will be returned to participants.
There are other genetic carrier screening studies and services currently running in Australia including for Sydney:
- The Community Genetics (NSW) school and community screening programs that provide year 11 students and community members the opportunity to undergo genetic carrier screening for 9 genetic conditions common in the Ashkenazi Jewish community (https://www.genetics.wolper.com.au/)
- The JeneScreen testing program offers BRCA testing online to people of Jewish ancestry who live in Sydney (https://www.genetics.wolper.com.au/brca)
- Mackenzie’s Mission, The Australian Reproductive Genetic Carrier Screening Project, that offers couples screening to identify those with an increased chance of having children with debilitating, and often fatal, genetic conditions. https://www.australiangenomics.org.au/our-research/disease-flagships/mackenzies-mission/
Genetic screening services can also be purchased from a range of commercial providers.
The current NSW Community Genetics Program, offered through NSW Health Pathology for Wolper Jewish Hospital, continues to operate. Results will be returned to participants by NSW Health.
The OneScreen Community Genomics study will operate as a research program alongside the current Community Genetics (NSW) program. Participation in the OneScreen research study is voluntary and will not affect participation in the existing NSW Community Genetics Program.
No. OneScreen is a research study and will not return results to individuals or their families.
The aim of this project is to develop a genetic screening test that will benefit the community in the future. Participating in this study will not provide any direct immediate personal benefit to people who take part. However, participants will contribute to improved screening practices in the future for both the Jewish community and the wider Australian population.
The OneScreen study collects a cheek cell sample (buccal swab) from each participant.
The process takes only a minute or two and involves the participant vigorously brushing the inside of their cheek with a swab using the same level of force as brushing your teeth. by the individual (with guidance from a researcher.)
Individuals who choose to provide a sample must NOT have consumed any food or drink, or chewed gum or smoked in the previous 30 minutes. These are the same requirements as the Community Genetics Program. If participating in both OneScreen and the Community Genetics program, participants usually give the cheek swab before the saliva sample for best results.
There is no cost to the student, school or family for the OneScreen study.
OneScreen operates with its own grant funding and philanthropic support.
Researchers involved in the OneScreen program will be attending a number of Sydney-based schools between March and October 2020 alongside the Community Genetics (NSW) program.
Families will receive information about OneScreen through school channels. Printed copies of the consent form and correspondence will come home with students after the education session at their schools.
If you have Ashkenazi Jewish ancestry and did not undergo screening at school, or had school screening some years ago, you can be screened by attending an information session followed by a sample collection at Wolper Jewish Hospital. This is often done prior to marriage or as part of family planning. If you would like to participate in the Community Genetics Program (NSW), please see the information on the Wolper Jewish Hospital website.
The OneScreen research study does not return results to participants. Therefore, there are no discrimination or insurance implications for you from this research.
However, please note that Garvan may separately advertise additional studies or programs where participants may have the choice to:
- provide researchers with ongoing access to their genomic data;
- have their genomic information included in a database for future research; or
- request access to their results to inform health and personal decisions for their future.
Any research studies of this type must be approved by Human Research Ethics Committee and will be advertised separately to the community.
Garvan’s Kinghorn Centre for Clinical Genomics protects, backs-up and keeps all genetic results and other data of or relating to individuals strictly confidential. Any personal data that is collected is kept in a separate location to genetic information. We apply best practice and ethical standards and comply with all applicable privacy laws and accreditation standards (including National Association of Testing Authorities, Australia (NATA) and National Pathology Accreditation Advisory Council (NPAAC) requirements).
The way your data is stored and accessed has been reviewed by a Human Research Ethics Committee to ensure that it follows the relevant legislation. In Australia this is the National Statement on Ethical Conduct in Human Research 2007. Researchers must also abide by The Australian Code for the Responsible Conduct of Research (2018), which includes adhering to all ethics guidelines, and severe penalties for breaches.
Your data is held and accessed according to the consent you gave at sample collection:
The OneScreen Research study does not collect or hold, your name, address, email, telephone or other similar personal information. Only your basic information (your initials, sex/gender, and date of birth) were collected on the day and are known to the Garvan research team.If you have agreed to storage of your samples and test results for use in research, members of the Garvan research team will be able to extract DNA from your cheek cell sample and analyse it as part of this research project.
If you have agreed to OneScreen Research access to de-identified demographic information and genetic test results from the NSW Community Genetics program for use in research, you have allowed researchers to use your demographic information collected on the day (initials, sex, date of birth) to compare your data from the research with your results from the NSW Community Genetics program. This information will only be used to validate the research test results.
Your DNA sample will be anonymised and stored with only a laboratory number. As the OneScreen study is a research program rather than a clinical service, we intend to store DNA samples until three months after the completion of the final research report at the end of the study. All DNA samples would then be securely destroyed.
As OneScreen is a research program, raw sequencing data will be retained until the research project is completed. At the end of the project, we will dispose of the data according to current guidelines: raw data would be destroyed after 4 years; the combined summary data would be destroyed after 10 years, and any other data would be destroyed 3 years after publication of the final research reports.
However, in the future, Garvan may advertise and invite community members to contact us to indicate if they wish their data to be used in other research programs or for their own medical purposes. If that choice becomes available, we would then follow the participants’ wishes and instructions.
You can withdraw your sample at any time up until it has been analysed and processed.
However, once the processed data has been anonymously pooled with other participant data, it is no longer possible to identify your individual data. It is therefore not possible to withdraw your data after that point.
Please contact OneScreen@garvan.org.au or call (02) 93555764 during business hours if you wish to withdraw from the study.
