7 Rights Research Participants Must Know in 2026: Joined Bio Patient Bill of Rights
At Joined Bio, we’re building the future of ethical patient research because we believe every person deserves fundamental rights when participating in medical studies. But while contributing to medical breakthroughs, you have rights that many research companies don’t tell you about. As an empowered patient, you deserve to feel safe, respected, and valued throughout your research journey.
Here’s your comprehensive guide to the 7 rights you should never compromise on:
- The Right to Complete Transparency in Medical Research
When you’re considering participating in research, transparency should be the foundation of every interaction. You deserve to know exactly how your data will be used, who will have access to it, how much compensation you’ll receive, and precisely how long each study will take. No surprises, no fine print, no last-minute changes.
At Joined Bio, we believe this transparency starts from the very first moment. Every study shows clear compensation details and time commitments upfront, because you deserve to make informed decisions about your participation. When research platforms operate in the shadows or use confusing language, they’re not respecting your time.
- The Right to Control Your Health Data
Your health information tells your unique story, and that story belongs to you. True patient empowerment means having the ability to decide exactly what information you’re comfortable sharing and who to share it with. Most importantly, you should have the right to revoke access to your data at any time, no questions asked.
This isn’t just about privacy; it’s about agency. You’re not a data point in someone’s spreadsheet. You’re a person with the power to decide how your health story helps advance medicine, and that power should remain firmly in your hands throughout the entire research process.
- The Right to Fair Compensation for Research Participation
Let’s be honest about something the research industry often tries to sidestep: your time, experiences, and health insights have real monetary value. When pharmaceutical companies and research institutions build billion-dollar breakthroughs, it’s often on the foundation of patient contributions.
Joined Bio offers transparent compensation up to $250 per study, ensuring participants receive fair value for their contributions. You deserve clear payment structures with no hidden fees or surprise deductions.
- The Right to Convenient, Dignified Research Participation
Research participation shouldn’t feel like a part-time job or require you to rearrange your entire life. The old model of research required participants to travel to clinical sites, sit in waiting rooms, and work around the researchers’ schedules. Modern technology and thoughtful design should mean you can contribute to groundbreaking studies while sitting on your couch.
Joined Bio has pioneered a home-based research model where licensed professionals come to you for specimen collection, surveys can be completed on your schedule, and the average study takes just 10 minutes on an average. Our approach to ethical research ensures studies fit into your life, not the other way around.
- The Right to HIPAA-Grade Privacy and Security
Your medical information is some of the most sensitive data that exists, and it deserves protection that matches its importance. But security isn’t just about technology, it’s about trust. When you share your health data for research, it should be used for exactly what you agreed to, nothing more and nothing less.
Joined Bio employs encryption, de-identification technology, and privacy and security features that reduce the chance of data breaches and identity exposure. We are committed to protecting your health data like it is our own.
- The Right to Withdraw from Research Studies Anytime
Consent in research isn’t a permanent commitment. It’s an ongoing agreement that you can modify or withdraw at any time. This flexibility recognizes that you’re a whole person with changing needs and circumstances.
Joined Bio’s flexible participation model lets you skip questions, take breaks, or completely withdraw from any study without penalty or judgment, putting participant autonomy first. Unlike rigid traditional research, we understand that life happens, priorities shift, and participant comfort always comes first.
- The Right to Respect as a Research Partner
Perhaps the most fundamental right is being treated with genuine respect. Your time matters. Your story matters. Your comfort matters. Your voice matters. This philosophy drives everything at Joined Bio, where participants are valued partners in advancing medicine, not just data sources.
Through our commitment to ethical patient research, we’re proving that the best research happens when patients are empowered partners, not passive participants.
Your Research, Your Choice
Say It Louder: “I will only participate in research that makes me feel like a human and not as a database of information.” Every time you choose to participate through a platform that respects your rights, you’re voting for a future where patient empowerment is the norm.
Ready to experience research done right? Join our growing community of empowered patients who are earning while advancing treatments for conditions that matter to them. Because when research respects your rights, everyone benefits.
Sign up & see which studies you qualify for. Connect your health data and start contributing today.
Learn more about patient privacy and security here. Join the Research Revolution!