As you think about the Discover Together Biobank, you may wonder if you or your child will be helped by this research.
While research helps with diagnosis, treatment, and prevention of illness, it can take time to see those benefits, so participants may not see a direct effect.
The chart below may help to understand the differences between research and medical care.
||Typically uses many volunteers to answer a specific research question.
||Addresses the needs of individual patients.
||Intended to benefit patients in the future.
||Benefits the individual patient in the present.
||Each study is different. (Discover Together Biobank does not have a set end date.)
||Decisions are made in real time.
||Research requires informed consent. (Discover Together Biobank requires informed consent of parents for patients under 18 and assent for patients over 11 who are capable of giving it.)
||Clinical care may or may not require informed consent.
||Participant samples and data samples are protected by government agencies, the Institutional Review Board, informed consent & legal standards. (In the case of the Discover Together Biobank, a Biobank Access Committee also will review all sample requests.)
||Patients are protected by state boards of medical practice, professional standards, peer review, treatment informed consent (when needed), and legal standards.
|Release of Findings
||Research findings are published in medical journals. Since most research is not identifiable, research results are often not returned to individuals.
||Patients learn the results of their individual medical tests from their clinicians. Individual medical records are never made public.
|Chart adapted from FDA website.