Adult Informed Consent To Participate In A Research Study Page 4

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variations may permit identification of individual participants, even if there is no
name on the samples. Despite this possible limitation, every precaution will be
taken to maintain your confidentiality now and in the future.
We have learned from past research that we will not always be able to predict
future research findings and new technologies. You should be aware that
unforeseeable problems may arise from new developments. Possible problems
include insurance or employment discrimination based on genetic information.
Sometimes genetic information suggesting different parentage is obtained during
research. We do not plan to report such findings to participants.
We will store any genetic research results from this study at UCLA Department of
Medicine. We will not put the genetic information in your medical records.
Within the limits imposed by technology and the law, every effort will be made to
maintain the privacy of your genetic information. All information is stored under
conditions that protect the privacy of study participants. For example, all
electronic data is coded and password protected and all hard copies are stored in
a locked file cabinet to prevent access by unauthorized personnel.
WHAT ARE THE COSTS?
Neither you nor your insurance plan will be billed for your taking part in this
study. The saliva cell sampling and genetic research will be conducted at no cost
to you or your health plan. If you had HG, you may volunteer to pay to have
your medical records sent to Dr. Fejzo. You may have to pay to have your
records sent; however, this is not a required part of the research. No other
procedures are required.
If you are living outside the United States, you will be asked to cover the costs of
the consent phone call to Los Angeles and the shipping of saliva sample kits for
you and your friend control from Los Angeles, California to your residence and
back to Los Angeles, CA for analysis.
ARE THERE ANY PAYMENTS TO YOU FOR TAKING PART IN THE STUDY?
You will not receive any payments for taking part in this study.
WHAT HAPPENS IF YOU GET INJURED OR NEED EMERGENCY CARE?
If you get hurt or sick from taking part in the study, you must pay for the care.
You will not receive any compensation if you get hurt or sick.
POSSIBLE COMMERCIAL PRODUCTS
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Protocol ID:IRB#11-001681
UCLA IRB Approved Approval Date: 9/15/2014 Through: 9/14/2015 Committee: Medical IRB 1

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