Q1: Can I take part in this study if I don’t have access to a computer or smart device?

Yes. We can accommodate this by arranging to have a trained research officer verbally conduct the questionnaire via telephone with you at an agreed upon time. If this is not suitable, we can provide you with a paper copy of the questionnaire to complete at home and return via post at your earliest convenience.

Q2: What will happen to my personal survey, biological and genetic information?

All personal information will be strictly used for research purposes and stored on secure servers behind the UQ security firewall. Genetic data is stored securely and separately from identifying information. All information will be stored indefinitely. All research to be conducted has been approved by The University of Queensland’s Institutional Human Research Ethics Committee; approval number: 2020001490. This ethic’s approval ensures that The University of Queensland and research staff will comply when undertaking research in accordance with the Australian Privacy Principles (2014), and the National Health and Medical Research Council (NHMRC) Guidelines for Ethical Conduct of Human Research (2007 – updated in 2018).

Researchers who are not from or located at UQ may apply to the Principal Investigators of the ATHENA Covid-19 Genomics Project use your data. Your data can be obtained and used by research who have their study approved by an authorised Human Research Ethics Committee. All researchers who which to use your data must agree to protect your privacy.

Q3: How will my biological sample be used for research?

DNA will be obtained from the biological sample you provide. The ATHENA Covid-19 Genomics Research team will analyse your sample and look for regions on the genome which could potentially explain why individuals respond in certain ways to Covid-19. It is anticipated that the results from this research project will be published and/or presented in a variety of forums. In any publication and/or presentation, information will be provided in such a way that you cannot be identified, except with your permission.

Q4: How will my personal information be kept confidential?

All personal information, questionnaire responses, biological samples and genetic data will be stored in separate, firewalled password protected databases. The only link between your information will be a unique participant identification number. Linking your personal details and other datasets using this number is restricted to the ATHENA Covid-19 Genomics Research team to protect confidentiality of participants. When results are published, they are done as aggregated data altogether; no individual results are included.

Q5: What is the difference between Genetics and Genomics?

Genetics and genomics both play roles in health and disease.

Genetics is a term that refers to the study of genes and their roles in inheritance - in other words, the way that certain traits or conditions are passed down from one generation to another. Genetics involves scientific studies of genes and their effects. Genes (units of heredity) carry the instructions for making proteins, which direct the activities of cells and functions of the body. Examples of genetic or inherited disorders include Cystic Fibrosis and Huntingtons Disease.

Genomics is a more recent term that describes the study of all of a person's genes (the genome), including interactions of those genes with each other and with the person's environment. Genomics includes the scientific study of complex diseases such as heart disease, asthma, diabetes, and cancer because these diseases are typically caused more by a combination of genetic and environmental factors than by individual genes. Genomics is offering new possibilities for therapies and treatments for some complex diseases, as well as new diagnostic methods.

Q6: What are Biomarkers?

A biomarker is a measurable indicator of some biological state or condition. Biomarkers are often measured and evaluated to examine normal biological processes, pathogenic processes, or pharmacologic responses to therapeutic interventions. Biomarkers are used in many scientific fields.

Q7: Will my whole DNA/Genome be sequenced?

Yes. Whole-genome sequencing (WGS) is a comprehensive method for analysing entire genomes. Genomic information has been instrumental in identifying inherited disorders, characterizing the mutations that drive cancer progression and tracking disease outbreaks. In the future of personalised medicine, whole genome sequence data may be an important tool to guide therapeutic intervention, predicting disease susceptibility and drug response.

Q8: Can I have access to my genetic data?

This research is not designed to provide any clinical results to participants. The study does not undertake individual analysis of each sample provided, but rather will undertake an overall comparison of genetic markers on all samples provided.

If you have a personal interest in obtaining a genetic test on your DNA, we suggest you consider contacting a genetic testing entity which can provide such testing. For example, an internet search on ‘DNA testing’ should provide such direction. We recommend that any interpretation of results from a genetic test is done in collaboration with a genetic counsellor.

Q9: Will my blood sample tell you about my ancestry or health?

The analysis we conduct on a participant’s blood sample will not tell us that individual participant’s health status, ancestry or predict health outcomes. Researchers are not looking for these particular genes in their analysis; rather they are searching for groups of common genes involved in health from a very large group of people.

Q10: Will I get results or updated information from this study?

We certainly want to feedback as much as possible to participants about the study, so we provide all participants with an update of the project's progress and results via email at the end of each data collection year. Furthermore, when we publish the results from the research, any genes identified in the development, course or treatment of disease and the effects of treatments and medications will be publicly available in a scientific journal.

Q11: Do I have to disclose my participation to my life insurer?

In this study you do not need to disclose to Insurers that you have participated in genetic research. This is because we are not providing participants any personal or family information from the research. The only results you will receive are those from the scientific papers we publish from the combined genetic analysis of all participants data.