Adult Informed Consent To Participate In A Research Study (Page 3 of 7) in pdf

Adult Informed Consent To Participate In A Research Study Page 3

ANTICIPATED BENEFITS TO SUBJECTS

There is no benefit to you from taking part in this study. This study is not being

done to improve your condition or health. You have the right to refuse to

participate in this study.

ANTICIPATED BENEFITS TO SOCIETY

We hope the information learned from this study will benefit other patients with

HG in the future.

WHAT OTHER OPTIONS ARE THERE?

An alternative would be not to take part in this study.

WILL YOUR INFORMATION BE KEPT PRIVATE AND CONFIDENTIAL?

The investigator and the Institutional Review Board (IRB) will keep your records

private as far as the law allows. The only people who will know that you are a

research subject are members of the research team. No information about you ,

or provided by you during the research, will be disclosed to others without your

written permission, except:

-if necessary to protect your rights or welfare (for example, if you are

injured and need emergency care); or

-if required by law.

We may publish the information from this study in journals or present it at

meetings. If we do, we will not use your name, so no information will be

included that would reveal your identity. Only the people who work on the study

will see your answers to the questionnaire provided in this study. The individual

responses to survey data will not be printed and will be electronically deleted

after analysis of the data. Your personal information, research data, related

records, and saliva sample will be stored with your ID number only. The code

linking your ID number to your name will be stored only on the locked password

protected computer of Dr. Fejzo, to prevent access by unauthorized personnel.

Each tissue and fluid sample contains genetic information about your parents,

and ancestors such as information contained in DNA, RNA, or protein. It may be

helpful to study members of your family. Your relatives will not be contacted

without your permission.

GENETIC INFORMATION IN YOUR SAMPLE: POSSIBLE LIMITS TO

INDIVIDUAL CONFIDENTIALITY

Every tissue or fluid sample contains genetic information. Recent studies have

found normal and disease producing genetic variations among individuals. Such

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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