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  • Basics
Learn all about participating in research studies focused on hereditary cancers, including breast, ovarian, pancreatic, prostate and melanoma.

Your rights as a participant

Participants enrolled in research studies have basic rights. It is the role of the researcher to inform patients of these rights.

Informed consent

Researchers in the United States and most other countries must follow strict guidelines to make sure that all people are aware of the risks and their rights before they participate in research. Researchers must provide patients with an informed consent form. This is a document with essential information that patients need before deciding if they want to participate. The consent form is usually a paper or online document that you must read and sign before enrolling.

The consent form is required to include information about the following topics:

  • The fact that your participation is voluntary. No one can force you to participate in a research study.
  • The purpose of the study.
  • The sponsor of the research.
  • How researchers will protect your privacy.
  • How your specimens and data will be used.
  • What you will be asked to do while enrolled in the study.
  • How long the study will last and how many people they are trying to enroll.
  • Any potential risks and benefits to you as a participant.
  • Financial costs, benefits and reimbursement for your travel or time.
  • The fact that you may withdraw from a research study at any time. Information on what happens to your information and data if you withdraw.
  • Other options available for your care if you elect not to participate in the study. This includes information about any standard-of-care guidelines for your situation.
  • The contact information for the person or people responsible for the study and who to contact in the event of a research-related emergency.

With all of this required information, some consent forms can be very long. Although consent forms are supposed to be written in plain language, they can still be very technical. It is your right to request a copy of the consent form to take home to read over or discuss with family, friends or other health care providers.

Withdrawing from research

Signing the informed consent means that you have read and understand information about the research study and your rights. It is not a contract, and signing it does not mean you are required to enroll or remain in the study. As mentioned above, you have the right to withdraw at any time, for any reason.

Study updates

During the trial, you have the right to learn if there are any new risks that emerge as the study is being conducted. Some larger clinical trials may provide a study newsletter to keep participants updated about how the study is progressing.

Permission to contact you again about future studies

Some research studies (such as research registries) may request permission to contact you again in the future. They may want additional information or to invite you to participate in new studies for which you qualify. This permission to contact you again must be included in the informed consent that you receive when you enroll. 

Minimal risk studies

On rare occasions, a study may be considered minimal risk. In this case a written and signed informed consent is not required. This is usually for studies such as anonymous surveys that do not collect any personal information or health information that can identify you.

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