Health Family Tree
Privacy Policy
Privacy Statement
This privacy statement was written to show our commitment to your privacy and to communicate our information gathering and dissemination practices. Privacy on the Health Family Tree website is of great importance to us. We reserve the right to change this statement. Participation is entirely voluntary and all information collected is strictly controlled and protected.

Collected Information
Participants in the Health Family Tree program will only be asked to provide their first name and the first names of their family members. These names are only used to label the pedigree diagram so that it is easier to identify the family member for whom you are completing information. You may keep the brother, father, grandmother, etc. designations as the first name if you wish. If you provide the first name, it is encrypted (scrambled by computer code) in the database by the program (written by a third party) so even the operators of the Health Family Tree cannot find out the actual first names. Once your Health Family Tree is finished, a unique, computer-generated number (ID#) will be assigned and your Health Family Tree will be stored under this anonymous number on a computer housed in the Cardiovascular Genetics Division of the University of Utah School of Medicine. Data transfer is done using only secure web pages.

The Health Family Tree provides the option for you to voluntarily provide your email address, name, mailing address, and phone number. These are kept secure and are not stored with your Health Family Tree. We will only use this information to let you know of resources your family may be interested in to help you reduce your risk of disease or to contact you to see if you are interested in participating in a medical research study. You may ask us to remove your name and contact information at any time. The data we collect is governed by the confidentiality requirements of the University of Utah Institutional Review Board. We cannot share your data with any other person not collaborating with the Health Family Tree investigators at the University of Utah.

Participants are responsible for maintaining the confidentiality and security of their username and password.

The Health Family Tree may also collect certain information from participants using the website, such as Internet addresses. This information is used to help diagnose technical problems and to improve the quality of the services provided.

Final Report (optional)
You will have the option (Yes or No) to receive an online report of your family's tendency for developing the diseases listed on the Health Family Tree. You do not have to receive this report if you don't want to.

Future Contact
You will also have the option (Yes or No) to have future contact from the Cardiovascular Genetics Research Program (University of Utah School of Medicine) for possible participation in other research studies. For example, we may be conducting a study on families that have a high risk of diabetes. If you agree to have future contact and submit your name, address, and phone number, we might contact you to see if you are interested in that study. None of this contact information will be stored with your Health Family Tree (i.e., this contact information will be kept separate from the Health Family Tree dataset). If you are contacted in the future, you will be under no obligation to participate.

Questions
If you have any questions or suggestions for improving this program, please feel free to contact the Health Family Tree staff by email at steve@ucvg.med.utah.edu. If you have any questions regarding your rights as a participant in the Health Family Tree program, or problems which you feel you cannot discuss with the Health Family Tree staff, please contact the University of Utah Institutional Review Board Office at 801-581-3655.

Assumed Consent
If you choose to complete the Health Family Tree, your consent will be assumed.

Cookies
A cookie is a piece of information that the Health Family Tree website sends to your browser, which then stores this information on your system. If a cookie is used, our website will be able to remember information about you and your preferences either until you exit your current browser window (if the cookie is temporary) or until you disable or delete the cookie. Many users prefer to use cookies in order to help them navigate a website as easily as possible. You should be aware that cookies contain no more information than you volunteer, and they are not able to invade your hard drive and return to the sender personal or other information from your computer.
Our uses of cookies is limited to storing a temporary cookie to remember a participant's identity as long as they are logged in and participating in an active session.

Third Party Sites
The site contains links to the other web sites. The Health Family Tree staff are not responsible for the privacy practices or the content of these other web sites. Participants will be responsible to understand the policy statement of these websites. The Health Family Tree does not send any information to a site opened through a link.

Security
Our website has security measures in place to protect against the loss, misuse, and alteration of the data under our control.

Correcting and Updating Your Information
If participants need to update or change their user profile, they may do so by editing the user profile record. To update a user profile, log on to www.healthfamilytree.com and click on the "Your Profile" link on the top navigation bar. From there you can select a new username or password.

A program of the University of Utah School of Medicine and Utah Department of Health.
Copyright 2005 The University of Utah Cardiovascular Genetics Division
Privacy Policy