Every research volunteer has rights. The WCM Office of Human Research Protections wants you to know your rights.
As a research participant, you have the right:
- To be told the purpose of the study; what question or human condition is being studied.
- To be told what will happen to you during the study; what procedures, drugs, or devices are not part of your routine care and are research related or investigational.
- To be told what the possible risks, side effects, or discomforts of participating are.
- To be told if there are any direct benefits to you, and what they are.
- To be told what other choices you have and the risks and benefits of these choices.
- To be told who will have access to your medical information as part of the study.
- To be told what medical treatment is available to you if complications arise while you are in the study.
- To be able to make up your mind about being in the study without being rushed or pressured.
- To questions about the study before, during, and after your participation.
- To refuse to participate; being in the study is voluntary.
- To change your mind even after you start the study. Your decision will not affect your right to receive the care you would get if you were not in the study.
- To receive a copy of the signed and dated consent form.
If you have any questions or concerns about your rights as a research participant, or the rights of a participant for whom you are a legal guardian, please contact your research doctor in the "Person to Contact" section of the consent document.
Researchers may not collect information from you without your consent.
Informed Consent is a process by which you are provided information about the research methods and procedures, including possible risks and/or benefits to you and why the research is important. During the Informed Consent process, you will be given a copy of the informed consent form and the a member of the research team will go over each section of the form with you. A discussion of your rights before, during, and after your participation also occurs during this time.
Once you have read and ensured your understanding of the information provided on the informed consent form, you will be asked if you agree to participate in the study. if you agree, you will be asked to sign the form and a copy will be provided for you to keep. Note that even if you sign the informed consent form, you can change your mind at any time and choose not to participate without any repercussions.
The National Cancer Institute explains informed consent and the consent process.
Child participants are asked for assent
Assent is when a child agrees to take part in a study. This is different from Informed Consent, as children are not legally recognized as being able to give true informed consent until the age of 18 years. Therefore, the child's legal guardian must go through the informed consent process and provide consent on behalf of the child. However, even if consent is obtained, the study cannot begin until the child gives assent. If the child does not give assent (dissents), the researcher may not collect any information, despite the guardian's consent.
For more information about Child Assent, visit the NIH National Cancer Institute page.
Do you have a question or concern about your involvement
in a research study at Weill Cornell Medicine?
Please contact the Weill Cornell Medicine Institutional Review Board (IRB) by phone (646-962-8200) or by email (firstname.lastname@example.org).
Weill Cornell Medicine also provides Research Participant Advocacy Services (contact information is available on their website). All information will be kept confidential.