Part of FitGene’s mission is to help people benefit from the human genome, and research is an important part of that mission. Here’s a summary of our Research Consent Document. Please read the entire document before deciding to participate.
Key Information:
- The purpose of FitGene Research will be to make new discoveries about genetics and other factors behind diseases and traits.
- If you agree to this consent, you allow FitGene researchers to use certain information (including your Genetic Information and survey responses) to study a wide range of topics.
- To protect your privacy, FitGene conducts research with information that has been stripped of your name and contact details, combined with similar information from other participants.
- Some FitGene Research might be conducted in collaboration with third parties, such as non-profit organizations, pharmaceutical companies, or academic institutions. We may share summaries of research results, which do not identify any individual, with qualified collaborators and in scientific publications.
- It’s unlikely you will directly benefit from your participation, though you and others may benefit in the future from discoveries that lead to healthcare advances or improvements to FitGene’s products or services. There is a very small risk of a privacy breach, where someone could access your Personal Information without permission.
- Participation is voluntary, and you can change your consent choice at any time without affecting your access to FitGene’s products or services.
1. Purpose: Why is FitGene conducting research?
FitGene Research aims to support scientific discoveries about genetics and other factors behind diseases, human capabilities and traits. We conduct our own research and collaborate with researchers worldwide by publishing findings in scientific journals. Results may help develop new ways to diagnose and treat diseases, help people improve their lives in general or create new reports and features for FitGene’s products and services.
We study:
- Genetic and other factors behind diseases, human capabilities and traits
- Ways to diagnose and treat diseases
- Enhancing human performance and abilities
- How people react to learning about their genetics
- How users interact with an online genetics and health platform
FitGene makes discoveries by analyzing information from many participants to find patterns. These patterns might indicate if people with certain genetic factors are more likely to develop diseases like cancer or diabetes. Another pattern might reveal a new way to enhance human capabilities or prevent certain health conditions. Results of our research may help develop new drugs or guide diagnosis and treatment decisions.
2. What does participation in FitGene Research involve?
If you choose to participate in FitGene Research, you will be asked to complete surveys or enter information into the FitGene website or mobile app. You decide what information to share and which surveys to take. Consent means agreeing to let FitGene researchers use certain information (including previously provided information) for research. We may use:
- Your Genetic Information
- Your Self-Reported Information
- Your age and ethnicity
- Information entered into the FitGene website or mobile app labeled
- Data from third parties authorized by you for research
- How you interact with the FitGene platform (e.g., genetic reports viewed or surveys taken)
- Your microbiome data (information about microbes in your biological sample)
Collectively, we refer to these data as Research Information.
There are currently no ongoing FitGene Research. We would inform you each time of new surveys and research opportunities. Invitations may be sent via email or notifications on your account or mobile device. For sensitive research topics, additional information will be provided to help you decide whether to participate. There is no cost to participate.
Some FitGene Research may be sponsored by or conducted with third parties. Discoveries may lead to products or inventions with value, but you will not receive financial benefits.
3. Participation of children in FitGene Research
Your child may participate if they assent and a parent or guardian authorizes FitGene to use their Research Information.
4. Privacy Protection
FitGene uses physical, technical, and administrative security measures to protect your information. Our practices include:
- Research analyses are conducted with de-identified Registration Information.
- Contact information is used for communication, not analysis.
Published or shared research results do not identify individuals. - FitGene maintains internationally recognized security standards.
- Employees are trained on working with human research participants and conducting research responsibly.
5. Access to Your Information
Outside FitGene:
- Summaries of research results may be shared with collaborators and in scientific publications without identifying individuals.
- Information may be shared with our ethics review board and other agencies to maintain compliance or as required by law.
Within FitGene:
- Researchers conducting analyses have access to Research Information, not Registration Information.
- For further details, see FitGene’s Privacy Statement.
6. Benefits and Risks of Participation
Benefits:
- Direct benefits are not provided; individual results about genetics or health risks are not shared.
- Future indirect benefits may include improved FitGene products or services and contributions to disease prevention and treatment.
- Survey participation may provide insights into FitGene's research findings.
Risks:
- Some survey questions or data comparisons may cause discomfort.
- Although FitGene has strict policies to minimize privacy breach risks, there is a very small chance of a breach.
- In a breach, Research Information could be exposed, potentially including family member data.
- Re-identification from summary information is remotely possible.
- There may be unforeseeable risks.
7. Changing Your Mind
Participation is voluntary; you may change your consent choice in your Account Settings at any time. Withdrawing consent prevents the use of your Research Information in new research after 30 days from receiving your request.
There is no penalty for not giving consent or withdrawing from FitGene Research. You retain access to your Genetic Information and Personal Genetic Service.
To stop participation, you may close your Personal Genetic Service account directly within your Account Settings.
If you choose not to give consent, your Research Information may still be used to improve FitGene products and services, as described in our Privacy Statement.Participation could be terminated without consent due to ownership transfer of FitGene or termination of FitGene products or services as described in our Privacy Statement and Terms of Service.
8. Contact Information
If you have any questions about these Research Consent rules, please contact us at info@fitgene.ba.
Thank you for choosing FitGene and be ready to Unlock your potential!