You may wish to involve family members in some parts of a research study. 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 legally authorized representative of someone who might be a research subject, you may wish to involve other concerned family members in any decision you make.

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.

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.