Information for Participants
Information Participants or Potential Participants Should Know
Please note that this list is not exhaustive and will be updated! Please watch for more info.
Consent
A guiding principle of Emory research is that consent is more than just a question of "yes" or "no." Click on the headings below to find out more about consenting to participate in research.
Potential participants are to be informed of the study's purpose, duration, predicted risks, predicted benefits, confidentiality measures, as well as how to contact the team running the study and that participation is voluntary and may be ended at any point without penalty.
Research that does not meet informed consent standards will not be approved by Emory's institutional review board (IRB).
Participation is wholly voluntary, and participants are permitted to withdraw from a study at any point without penalty. To do so, participants may contact the study team at the study-specific email, or email the contact listed in the consent form.
Note: De-identified data (that is, having no personal identifiers) will not necessarily be removed following withdrawal.
Participant Privacy and Confidentiality
Maintaining the privacy and safety of our participants' personally identifiable information (PII) is something we take very seriously at PRISM Health. Click on the headings below to find out more about the protections you have and the responsibilities we have.
Certificates of confidentiality are legally-binding certificates that are provided by the National Institutes of Health (NIH) to studies funded through NIH grants and are guaranteed by federal law. Originally signed into law by Congress to protect people participating in research about controlled substance use from prosecution, certificates of confidentiality shield all study data from being subpoenaed.
All NIH-funded studies/programs will have a certificate of confidentiality, but not all of the studies/projects in PRISM's portfolio are NIH-funded. Check your informed consent document for information about the presence of a certificate of confidentiality.
We follow Emory's extensive data security policies and procedures. Machines with access to study data are locked and secured when not in use, and all data is encrypted. Non-specific identifiers are used in lieu of personal identifiers in datasets, and personal identifiers are stored separately for security.
Data may be stored in one of two places:
- On the secure servers of HIPAA-certified, legally-contracted, and Emory IT-approved survey tool providers and biospecimen laboratories.
- On Emory's own secure physical servers.
This is largely dependent upon the specific study/program, and this will be detailed in the informed consent document.
At Emory, only study staff and faculty who have the approval of the IRB for the specific study/program are able to see de-identified, raw data.
Funding
The work that PRISM does receives funding from many places including the National Institutes of Health (NIH), pharmaceutical collaborators, academic grants, and more. Check your informed consent document to see who the sponsors are for the study/program you are participating or considering participating in.