The ABC’s of Biobank Research

By enrolling in the biobank, you are helping researchers answer some of today’s most important questions in personalized medicine. The data that you contribute are carefully managed through the Access to Biobank Committee (ABC), a dynamic group of researchers, compliance and ethics experts, and clinicians that are committed to safeguarding your data.

When a researcher is interested in doing research with data from biobank participants, they must first submit an application to the ABC that explains why they are requesting the data, and what scientific advancements they hope to achieve. The ABC takes your information and privacy seriously, so we review each request to ensure that the research complies with and respects the consent form signed by you, that the research methods are ethical, and that the research has the potential to add to the science around personalized medicine.

The ABC is also working on ways to provide participants the opportunity to be involved in new research being conducted through the biobank. When you signed the consent form, you indicated that you were interested in being contacted about new research programs or studies that may arise. The ABC works closely with researchers that may be interested in contacting biobank participants to enroll them in their studies. These research proposals are carefully reviewed by the ABC.

If you are eligible to participate in a new study, the biobank will reach out to you to ask if you are interested in this opportunity. You will never be directly contacted by a researcher outside the Biobank. Your participation in any future study is completely voluntary. We greatly appreciate your willingness to be a part of the biobank. Your contribution is helping to advance the promise of personalized medicine for all of us.