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Through advances in science and medical research, researchers and physicians
have been able to offer new treatments, prevent illness, and answer many questions
about health and the human body. These important advances were made possible
thanks to the many research volunteers whose participation led to valuable
information that can be applied to many people. The September 21, 2005, issue
of JAMA is a theme issue dedicated to medical research.
There are many ways to support medical research. You may choose to participate
in a research study. By participating in a research study, you may receive
free medical care and laboratory studies as well as receive treatments that
may possibly prove beneficial before they are offered to others. You should,
however, be well informed before considering participation in a research study
since all studies vary in the benefits and risks involved (see "Before Participating
in a Research Study"). You may make financial contributions to support finding
treatments or discovering causes of certain illnesses. Many charitable organizations
and universities involved in funding research rely on private contributions
for their research grants (money awarded to researchers
to pay for the costs of developing and performing research studies).
You should be told
The purpose of the study
Who is conducting the study
Your right to participate, to not participate,
or to drop out of the study
How long the study will last and the amount of
Your duties as a participant
How safety will be monitored
If you experience harm during the study, how it
will be handled
Whether insurance or a grant will cover the costs
Contact your doctor if you are considering participating in a research
study to be sure that any interventions you may receive as part of the study
will not interfere with your ongoing treatment or care.
A potential research participant must be told about the study and informed
about the potential risks and benefits and the alternatives to participating.
The participant must acknowledge understanding and then provide his or her
consent before participating. This often includes a written form that ensures
that consent was granted and that the participant understood. It does not
require the participant to remain in the study if he or she no longer desires
to do so. Before a study can be conducted, the sponsor must obtain approval
from an ethics review committee. Such committees
are usually composed of a diverse group of physicians, scientists, and lay
people who evaluate the study and ensure that the participants are not exposed
to unnecessary or excessive risk and that the rights of participants are protected.
In the United States, ethics review committees for biomedical research are
under Food and Drug Administration (FDA) regulation and are called institutional review boards (IRBs). In addition, the Office for Human
Research Protections (OHRP) in the US Department of Health and Human Services
ensures protection of the rights and interests of research participants.
If you would like to participate in a research study, you can find opportunities at government Web sites such as:
http://www.cancer.gov/search/clinicaltrials (Cancer studies)
http://www.aidsinfo.nih.gov/clinical_trials (HIV and AIDS studies)
The American Cancer Society provides a worksheet and offers information
on its Web site, http://www.cancer.org, regarding insurance coverage
for research studies.
To find this and previous JAMA Patient Pages, go to the Patient Page
link on JAMA's Web site at http://www.jama.com. A Patient Page on cancer clinical trials was published in the June
9, 2004, issue; and one on participating in medical research studies was published
in the February 7, 2001, issue.
Sources: National Institutes of Health, National Cancer Institute, Food
and Drug Administration, Department of Health and Human Services, American
The JAMA Patient Page is a public service of JAMA. The information and recommendations appearing on this page are appropriate
in most instances, but they are not a substitute for medical diagnosis. For
specific information concerning your personal medical condition, JAMA suggests that you consult your physician. This page may be photocopied
noncommercially by physicians and other health care professionals to share
with patients. To purchase bulk reprints, call 718/946-7424.
TOPIC: MEDICAL RESEARCH
Brender E, Burke A, Glass RM. Supporting Medical Research. JAMA. 2005;294(11):1454. doi:10.1001/jama.294.11.1454