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How does research participation work?

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Research participation is a crucial part of aiding progress in science and medicine. Researchers rely on volunteers who are willing to donate their time, information, genetic data, and biological samples to help further our understanding of rare and undiagnosed diseases. Check out the FAQs below to learn more about research participation - and see the GREGoR Collaboration webpage for more information about the study approaches for each of the 5 Research Centers in the GREGoR Consortium.

See NHGRI's overview about Participating in Genomics Research

Frequently Asked Questions (FAQs)

What happens when a person joins a research study?

What is done in a research study will depend on the research question that is being asked. Researchers may collect information about participants such as medical records, clinical symptoms, other health evaluations, and genetic test reports. If they are doing research involving genetic testing, they may ask for a sample from the participant - this could be a blood draw, saliva (spit) sample, or other body tissue.

Do research participants get results after they participate in a study?

Some research participants may get results returned to them and others may not. Unlike testing that is done in a medical clinic that is recommended by a healthcare provider, the purpose of research testing is often to learn more about science and medicine in general, rather than to diagnose a specific patient or participant. If the research testing can be validated in a clinical laboratory, results or information might be returned to a research participant. But not all research testing can be validated because researchers are still developing and confirming the accuracy of the research test(s).

Research articles are one way that research participants can learn more about the research they participate in if they are interested in more general (rather than personal) findings. Most studies will publish reports or articles that summarize their research findings. For example, a group of researchers might publish a paper when they discover a new gene that is thought to cause a condition that has never been described.

Research participants who are working with one of the GREGoR Research Centers may get results from the study, depending on the policies at the research site. If you contact a GREGoR Research Center directly to enquire about research study participation, you can ask them about this.

Will my data be shared with other people?

In science, sharing research data and findings is one way that new discoveries can be made. As of 2023, the National Institutes of Health requires transparent sharing of data for federally-funded research.

Data shared in research is almost always required to be de-identified and anonymized so that individual research participants cannot directly or easily be identified by their individual data. There are legal requirements for how research data is made anonymous and protected so that it cannot be seen or used easily by people who do not have permission to do so. Research institutions and federal regulations require that research meet certain data protection standards and have a data protection plan prior to starting any research study.

When research participants enroll in a research study, they may be asked to agree to have their data shared with other researchers. Once a research participant gives consent to have their data shared, it is usually anonymized and the (readily) personally-identifiable information is removed. Potential research participants should ask their research teams about data sharing if they want to learn more.

Research data is shared in many ways. Data may be shared directly from one researcher to another or may be uploaded to large databases that include data from hundreds, thousands or even millions of people.

What are the benefits and risks of participating in research?

Participating in research can help researchers understand how diseases work and can help doctors and scientists develop new drugs and therapies to help treat people with diseases or improve their lives in other ways. Some people feel that participating in research allows them to contribute to science, help other people, and learn more about a condition they or their family member has.

The risks of participating in research will depend on the research study. Some risks might include a blood draw causing some pain, feeling upset about results, feeling upset about not receiving results, or personal data being shared in a way other than what the participant expected. Participants should ask researchers about the risks that apply to their studies.

What is consent in research? What is “informed” consent?

“Consent” involves much more than signing a consent form - it is the process of providing permission and agreeing to participate in research after being given and reviewing all aspects of participation with the study researcher/representative. Informed consent involves making sure that the potential research participant understands what is involved, what to expect in the research study, and what will happen with their personal information and/or biological samples (such as a blood sample, DNA sample, or tumor sample).

Where can I learn more about research participation? How can I participate in a research study at one of the GREGoR Research Centers?

Some of the GREGoR Research Centers are actively recruiting new research participants. To ask about opportunities to participate, check out the Collaboration page to learn more about the study focus for each of the GREGoR Research Centers, and for information about how to contact one of the GREGoR Research Centers or the Consortium to enquire about the possibility of participating in a research study.