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Questions About My Participation
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If I sign the consent form, what am I agreeing to do?
You are agreeing to let us use the information you
will be asked on the questionnaire for both local and possibly national research. This
information alone is very valuable for researchers. You are NOT obligated to do anything
further.
We will be contacting you by phone or mail on a yearly basis to update some of the
information you originally gave us.
We may ask you to participate in other activities. You may remain enrolled in the Cancer Genetics Network without participating in any of
these activities:
- We have and will ask some participants if we may contact family members. Those who are
asked can decide at that time whether or not we may invite their family members
to participate. Family members will be asked to read and sign the consent form and
complete the questionnaire.
- We have and may ask some participants to provide a blood sample, tissue from a surgery they have had, or other types of biospecimen. Participants will receive more information and sign a separate form
before they decide whether to participate in this part of the network. We can make
arrangements for the blood sample to be drawn close to your home.
- We may ask some participants if they would be willing to participate in studies
that are being conducted by researchers throughout the national Cancer Genetics Network.
We would call or write with information about the study, and the participant can make a
decision at that time if he or she is interested in that new study.
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How did you get my name?
Many of the people we recruit are first contacted because they have been identified by their state or hospital cancer registry.
By law, all cases of cancer diagnosed or treated in Utah must be
reported to a Cancer Registry, which serves as the official repository for this
information. Because this information is highly confidential, patient names can only be released to qualified researchers after certain requirements have been met.
Other members of this research program are invited to participate because they have a
close family member who is also participating. We will only invite family members if we
have been given permission to contact them.
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If I have never had cancer, how useful am I to this project?
Probably very useful. Good science results from a
hypothesis (theory), which is a statement that a research team believes to be true, but
needs to be tested. Many times, that hypothesis is tested by comparing two groups. One
group has cancer or a strong family history of cancer and the other group does not and is
called the ‘control’ group. If you do not have cancer, you will be invited into
this study possibly to serve as a control for some research projects.
Another way in which you would be very useful to this project is if you are a member of
a family in which there is a lot of cancer. In some of those families, certain members may
be at an increased risk for developing cancer. People in this group could be invited to
participate in prevention studies which would give us information about factors that might
decrease that risk.
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What benefit is there to me if I have already been diagnosed with cancer?
There may be no direct benefit to you if
you already have cancer. For some people, there may be an opportunity to be in other
research programs for which they may be eligible, such as those regarding cancer recurrence or different cancers occurring.
Some people might consider this a benefit. In addition, research conducted by
the Cancer Genetics Network may result in new tests or treatments to prevent cancer, which
may not benefit you directly, but may benefit future generations.
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If my cancer is in remission or has been cured, how useful am I to this project?
You and your questionnaire
information are very important to us because we are interested in the causes and treatment of
cancer. We welcome participation from people whose cancer is in remission.
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I didn't undergo "traditional" cancer treatment. Are you interested in me?
Yes. We are interested in
gathering information from people who have gone through a variety of cancer treatments.
(This includes alternatives such as "watchful waiting" or herbal treatments)
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