Depending on your living situation, age, and specific condition, you may wish to involve family members in some parts of a research study. Younger people (or seniors) who are not living on their own, or those who have guardians or live in an assisted-living facility may find it valuable to consult with their family, guardians or friends in understanding whether it may be beneficial to participate in a clinical trial.
For example, you might consult with a family member about taking part in the study, or you may wish to look over this booklet with a family member or close friend and discuss being a research subject with that person. If you are a parent or otherwise a legal guardian of someone who might be a research subject, you may wish to involve other concerned family members in any decision you make. If you’re a parent, you want to ensure you understand the study fully before allowing your child or teenager to participate in the study.
Many family members welcome the chance to make sure, along with the research team, that no one will take advantage of you during the study. This role is clear if a family member is a patient’s formal legally authorized representative; but even lacking such legal status, families usually do all they can to protect a family member who is ill.
If you are a family member who wants to get involved, please ask questions of the researchers before the patient signs an informed consent form. What university IRB approved the research? What are its goals? Who are the primary investigators? Will the person know whether they are being given an active treatment or a placebo? Who should they contact if something goes wrong, or the person misses a dose or treatment?
Remember that Federal regulations protect your right to privacy in the handling of your records throughout (and following) a study. You must give clear permission if you wish the researcher to share personal information about you with family members. Still, you should be aware that, with your consent, your family members or other friends may have several opportunities to provide information during the study.
The more questions you ask about a research study, the better. Participants should go into a study with eyes wide open and know everything they can about what is likely to happen, and what the possible outcomes of being involved in the research may be for the patient.