INFORMATION FOR INDIVIDUALS
Our Mission Before you decide to take part, it’s important you understand who we are, what we do, and what joining means. Data4Science is building a large collection of information to help both you and scientists to understand more about health, behaviour, and how our environment affects both. The goal is to support research that helps people live healthier, better lives. Your chance of developing certain health conditions or taking part in particular behaviours can depend on your biology, your family background, and the place you live. That’s why we ask for and collect information about you and your environment — so researchers can study how these things connect and eventually feed that information back to you. Collecting this kind of information takes a lot of time and money, and often only big companies can afford to do it. By donating your data, you make it possible for independent researchers at universities and research centres to use it for studies that benefit individuals and society, not just for commercial reasons.
How and why you can donate your personal data? You can share (or “donate”) your personal data with Data4Science because privacy laws in many parts of the world — including Europe, the United Kingdom, the United States, Canada, and other regions — give people increasing control over their personal information. In Europe, this is mainly through the General Data Protection Regulation (GDPR), which came into effect in May 2018. The United Kingdom follows the same rules through the UK GDPR and the Data Protection Act 2018. These laws require organisations like us to handle your data safely, fairly, and transparently — and they inspire similar standards in other countries. Even if you live outside the UK or EU, we apply the same strong privacy principles to everyone who joins Data4Science. That means you get the same level of care and protection, no matter where you are. Here’s what this means for you: •You have the right to access your data. Under Article 15 of the GDPR, you can ask any company (including us) to give you a copy of the personal data they hold about you. •You have the right to data portability. Under Article 20 of the GDPR, you can ask for your personal data in a format that you can download, keep, or share with another organisation if you wish. This right is what allows you to donate your personal data to Data4Science or anyone else you choose. •Right to deletion (the “right to be forgotten”). Under Article 17 of the GDPR, you can ask for your data to be deleted if you no longer want it stored or used. If you are in the United States or another country, you may also have local rights under privacy laws such as the California Consumer Privacy Act (CCPA), the Virginia Consumer Data Protection Act (VCDPA), or similar national or state laws. Wherever you live, you can still: •Ask for access to your data •Ask for it to be deleted •Ask to download or share it elsewhere We make sure that everyone who takes part — no matter where they are — can exercise their rights easily and that their data is stored and processed under strong international privacy standards. Because of these rights, you can collect data about yourself from other companies (like fitness apps, online accounts, or social media) and choose to donate it to Data4Science to help support research for the public good. We promise to follow the privacy laws of your region and to protect your information using strict technical and organisational safeguards.
How we are funded and ethics The first phase of Data4Science was funded by the European Research Council (ERC). This included an Advanced Grant and a Proof of Concept Grant awarded to our founder, Professor Melinda Mills. We also received support from The Leverhulme Trust through the Leverhulme Centre for Demographic Science, which Professor Mills founded and directs. As the project has grown, Data4Science has developed from a university-based research project into a socially responsible business. This means that we now manage our own running costs and research funding — not by selling your data, but by charging approved researchers a fee to access it for legitimate scientific studies and other potential future uses as the business develops. This approach is common in other large research resources in the UK, such as the UK Biobank, and helps us stay independent, secure, and sustainable for the long term. We may receive additional funding or investment in the future to support our work. Whenever this happens, we will always be open and transparent about who funds us. Details of all funders and supporters will be published on our official website, so you can see exactly who helps make this research possible. No matter where our funding comes from, our core mission stays the same: to use data responsibly, protect your privacy, and support science that benefits everyone. Ethical Review of the Study Before any research involving people can begin, it must be checked by independent experts to make sure it is safe, fair, and respectful. This process is called an ethical review. When Data4Science was based at the University of Oxford, the project was reviewed and approved by the University of Oxford Research Ethics Committee (reference CUREC2 R67905/RE001) and the European Research Council (ERC) Ethics Panel (project number 957566). These reviews included advice from external ethics experts who are not part of the research team, to make sure our work meets the highest standards. We continue to follow these same ethics rules as Data4Science grows. Regular ethics reviews will take place throughout the life of the project. We also have a dedicated Ethics Committee that is part of our governance structure — this means that ethical checks are built into how Data4Science is managed and run. The committee’s main job is to make sure that all of our work continues to: •Protect your rights and privacy under the UK and EU GDPR, •Keep your data safe and used responsibly, and •Ensure that every research project using Data4Science data is in the public interest and follows the highest scientific and ethical standards.
What are the benefits and risks? When you ask a company for your personal data, you have the right to get it — but what you receive can be hard to understand. The files are often huge, full of numbers, codes, and strange letters that don’t make much sense to most people. That’s where Data4Science comes in. We’re a team of researchers and scientists from Oxford who work with this kind of data every day. When you join us, you’ll get the chance to learn more about yourself and how your data can be used for real scientific discoveries. By donating different types of data and filling in our short surveys, you might uncover new things about yourself — such as: how you spend your time, how active you are, how your emotions change over time, how you come across on social media or when you seem to be at your best (and when you might need a rest). You might even choose to receive tips and insights for self-improvement, all while helping others. When you engage in different activities such as filling in a questionnaire, donating data or reading one of our handy tips, you earn points and rewards. Everything is currently still in early stages, but our aim is to allow you to eventually redeem those points for something concrete in return. Stay tuned! When you share your data with us, you’re helping to free it from the private vaults of big companies so it can be used for good science, not just for profit. Your data helps make research fairer and more open — this is called democratising data ownership. Your generosity could lead to discoveries that one day help improve mental health, lower healthcare costs, and speed up diagnosis and treatment for everyone. We also believe in open science, so every researcher who uses your data through Data4Science will share their findings with you on our website. You’ll be part of a growing global community that’s using data to understand people and improve lives. Are There Any Risks in Joining? What are the risks of joining? Taking part in Data4Science doesn’t involve any physical risks — no tests, no medical procedures, and nothing that could harm you physically. But there are some things to think about when it comes to the information you might see or share. When we study data, especially from places like social media or wearable devices, we can sometimes spot interesting patterns — such as what times of day you’re most active, or how often you “like” posts. You probably already know this about yourself. However, occasionally, we might find something unexpected. This is called an “incidental finding.” It’s quite rare, but it could happen — for example, a sign of a medical issue from health or fitness tracker data that you didn’t know about before. You can choose not to receive any information about incidental findings if you prefer. If you do want to receive them, there’s a careful process run by our independent expert committee to make sure it’s handled safely and respectfully. You can read more about this in our full policy on our website: www.data4science.com. We also offer ways for you to learn more about yourself through your data. Many people find this exciting and empowering — but for some, it might cause worry or discomfort. If the information seems sensitive, we’ll first show you an example of what that kind of result looks like (from someone else, not you) so you can decide whether you want to see your own. Our work is always overseen by ethics advisors, whose first priority is your safety and wellbeing. We take data security very seriously. Your information is stored using strong technical protections and strict access rules. Even so, no system is 100% risk-free. The chance of your identity or data being revealed without permission is very low, but not zero. If there is ever a data breach, we have a clear emergency plan. We will follow the GDPR’s legal requirements — including telling you promptly if your data could have been affected, explaining what happened, and what steps we are taking to fix it.
Will You Contact Me Again in the Future? If you agree to join Data4Science, we might contact you again later — but only if you’ve given us permission. You can change your communication preferences at any time. You can do this through links in our emails or by changing your personal settings. We might contact you to: •Share new information or updates about Data4Science •Invite you to see new material or results from your data •Ask about your experience of taking part •Invite you to fill in another short questionnaire •Ask if you’d like to donate new types of data (like from a fitness tracker) •Invite you to join new research studies that match your interests •Ask your permission to collect information about you from other sources •Offer you the chance to view personal insights that come from your data Your Privacy, Your Choice We will never share your contact details or other personal information with any researcher, organisation, or company without your explicit permission. Everything we do follows international privacy laws — including the UK GDPR, the EU GDPR, and similar protections in other countries such as the U.S. state privacy acts (for example, the CCPA). Your privacy, safety, and choice always come first.
What Happens If I’m Invited to Join Another Study? Sometimes other researchers may want to invite people from our platform to take part in a new study — for example, one focused on a particular health or behaviour topic. If you are invited, you never have to say yes. Here’s what would happen: 1.We’ll contact you first and share basic information about the new study. 2.You can read about it, ask questions, and decide whether you’re interested. 3.If you don’t want to join, we won’t contact you again about that study. 4.If you do want to take part, we’ll invite you directly — but the researchers leading that study won’t see your name or contact details unless you’ve given clear, written consent and it’s necessary for the study. You can always say no to any future invitation, and it won’t affect your current participation in Data4Science in any way.
How Do You Protect My Data? Keeping your information safe is one of our top priorities. We follow strict rules under the UK GDPR, the EU GDPR, and other international privacy laws to make sure your data is handled safely, fairly, and transparently. Everyone who works with your data — including all Data4Science researchers and any approved scientists — must agree in writing to protect your privacy and follow these same rules. We store your data with trusted partners who meet high international standards for quality and security, including ISO 9001 (Quality Management) and ISO 27001 (Information Security Management) certification. These standards mean that our systems are regularly checked by independent experts to make sure your data is safe. You can always read the most up-to-date and detailed information about how and where we store data, and who processes it, in our Privacy Policy. When we store or move your information, it is always encrypted — this means it’s turned into a secret code that only authorised systems and people can read. Your data stays encrypted both when it’s being sent (“in transit”) and when it’s stored (“at rest”). We also de-identify your data. That means details like your name, address, or location are removed and kept separately in another secure system. The data that researchers use can’t directly identify you. Even though no system in the world is 100% risk-free, we use the strongest protections available and constantly review our security measures to keep your information as safe as possible.
Who Gets Access to My Data & What Happens with the Results? Who gets access to my data? Our goal at Data4Science is to help you learn more about yourself and to make your data useful for scientific research that benefits everyone. We believe in transparency, which means being open about how your data is used and by whom. We will publish information about all approved projects and researchers who use the data on our website, so you can always see who’s involved and what they’re studying. Researchers who can apply to use the data through our Scientific Committee include: 1.Data4Science researchers working on our own studies, 2.Researchers working with Data4Science on behalf of another organisation, and 3.Independent researchers from universities, charities, government organisations, or approved commercial companies. Just like other large scientific resources in the UK (such as the UK Biobank and Our Future Health), we may allow commercial researchers — such as those in biotechnology or pharmaceutical companies — to use the data only if: •Their research fits within our mission of improving public health and wellbeing, and •It passes strict scientific and ethical checks. Any company or organisation that could make a profit must still follow the same ethical and scientific rules as everyone else. Some requests will never be allowed. For example, we will not approve access for organisations that want to use data to influence voters, target individuals, or spread misinformation. These are our “red lines” — clear boundaries set by our Scientific Committee and Advisory Board. Everyone who is approved to use the data must: •Be a registered researcher using our secure research system, •Use the data only for legitimate scientific purposes, and •Agree in writing never to try to identify anyone from the data. All the data shared with researchers is de-identified, which means your name, contact details, and other personal information are removed and stored separately. No one outside the small Data4Science team can link the data back to you. We will never sell your data or share it with any company for advertising, marketing, or profiling. We will never allow access for any reason that is not connected to genuine scientific research or that is not for the public good. Special types of data — such as your ethnicity, sexual orientation, or other sensitive information (called special category data under the GDPR) — will never be used for commercial purposes or marketing. No organisation will ever receive exclusive access to all the data. If the police or law enforcement ever request access, we will only provide it if required by a court order, and we will resist any requests that are not legally justified. Data4Science is the legal owner of the database and any sample collections, but you remain the owner of your personal rights under privacy law — including your right to access, correct, or delete your data at any time. What Will Happen to the Results of the Research? The results from Data4Science will be shared with the scientific community and the public so that everyone can benefit from the discoveries. Most of our findings will be presented at scientific conferences and published in research journals. Because good science takes time — collecting enough data, checking accuracy, and going through a process called peer review (where other experts carefully check the work) — it might take several years before the main results are ready. When results are shared, they usually show groups of people, not individuals. If any data from single participants is shown, it will be completely anonymous, meaning that there is no way to identify who the information belongs to. You will never be named or recognised in any report, talk, or publication. Researchers who use Data4Science come from many fields — universities, charities, and companies — and sometimes their discoveries may lead to new products, technologies, or health solutions. These researchers may make a profit from their discoveries, but they must still follow strict rules: •Their research must benefit the public, not just private interests. •All results must be shared openly and transparently. •Findings should be published in peer-reviewed and, whenever possible, open access journals so everyone can read them. •Researchers must also prepare a public communication plan to explain their discoveries in a way that’s clear and easy for people to understand. You can choose to receive regular updates from Data4Science about our progress and new discoveries. We’ll share this information through our website and newsletters, so you can follow how your contribution is helping science move forward.
How Long Will My Data Be Stored? Data4Science is designed to be a long-term scientific project. We collect information so researchers can look for patterns or early signs of health, behaviour, or environmental factors that might affect people over time. Because research often takes many years, we need to keep your data for a long period. This is allowed under the law when the data is used for research that benefits the public. According to the UK GDPR and EU GDPR, your personal data can be kept longer for scientific or historical research, as long as we follow very strict safety and privacy rules. This is written in Article 5(1)(e) and Recital 39 of the GDPR. These laws say that: •Personal data should not be kept forever, but •It can be stored for longer if it is used for research in the public interest, and •Only if technical and organisational measures are in place to protect it — which we do. Your information will be stored securely for as long as Data4Science continues to operate and we can safely protect it. We regularly review our systems to make sure the data remains secure and that keeping it continues to serve a valid scientific purpose. If the project changes in a major way — for example, if there are new scientific rules or legal requirements — we may contact you to renew your consent. You can always choose to withdraw from the project at any time, and we will explain what that means for your data.
Can I Withdraw at Any Time? Yes — you can withdraw from Data4Science whenever you like, and you don’t have to give a reason. Under Article 7(3) of the UK and EU General Data Protection Regulation (GDPR), you have the legal right to withdraw your consent at any time, and it must be as easy to withdraw as it was to give. You have full control over your data and your participation. Leaving the study will never affect your rights or your relationship with us. If you choose to withdraw, there are two ways to do it: 1. No further contact You can ask us not to contact you again, but still allow us to keep and use the data and samples you’ve already shared. This means: •You won’t receive messages or invitations from us anymore. •Your existing data can still be used in ongoing or future research projects. 2. No further use You can ask us to stop using your data altogether. This means: •Your data will no longer be available to researchers. •We will securely delete or destroy your data from our systems. •We will keep only a small record of your withdrawal (for example, your consent form and the date you withdrew) for audit and legal purposes, to show we followed your wishes. However, it’s important to understand that we cannot remove your data from research that has already been completed or published, because those results are now part of the scientific record. You can make these choices easily: •In the Settings section of the app, •By using the unsubscribe link in our emails, or •By contacting us directly at contact@data4science.com. If you decide to withdraw, we’ll confirm your choice and explain exactly what will happen next, so you always know how your data is being handled.
Getting Involved and Contact At Data4Science, the people who share their data — called data subjects — and other important groups, known as stakeholders, help guide how the project is built and managed. We believe that the people who take part should have a voice in how Data4Science grows and operates. That’s why participants, advisors, and community members have already been involved in our planning and will continue to help shape our future. If you would like to get involved, share your ideas, or find out more about how you can take part in the governance (the way decisions are made) of Data4Science, we’d love to hear from you. You can contact us any time at contact@Data4Science.com. Your opinions and feedback help us make Data4Science stronger, fairer, and more open — for everyone. Contact for Further Information, Concerns & Complaints If you’d like to know more about Data4Science or how to take part, you can contact our team any time at: contact@Data4Science.com If you have questions about your rights, or if you wish to make a complaint about how your data has been handled, you can also contact someone independent of the research team. In the United Kingdom, this is the Information Commissioner’s Office (ICO) — the national authority that makes sure data protection laws such as the UK GDPR are being followed. You can contact the ICO by visiting www.ico.org.uk or by calling 0303 123 1113. If you are based outside the UK, you can contact your local data-protection authority for advice about your rights under your country’s privacy laws.