Why are we focusing only on breast, ovarian, colorectal, and uterine cancers?
Because scientists have found genes that can increase a person’s risk for Breast, Ovarian, Colorectal, and Uterine Cancers. This means that these risks can be hereditary (run in a family). We hope to expand on other cancers in the future.
What are the differences between family health history and cancer genetics?
Family health history is a general term that refers to identifying health issues that are passed on through family generations due to genes. Some health issues run in families due to genes. This includes cancer. Our project focuses on cancer genetics education to promote learning about your family health history to find out if cancer runs in your family, and steps you can take to reduce your risk for developing cancer.
Can I participate if no one in my family has cancer? Can I participate if I do not know much about cancer?
Yes, as long as you are: - deaf/hard of hearing - age 18 or older - use American Sign Language - have access to a computer with internet
The Deaf community is small. How will you keep our opinions and identities confidential?
Our research team takes participant confidentiality and privacy very seriously. Your identities and your responses in the study will be coded and kept in a locked filing cabinet and an encrypted computer database.
What if I do not understand a question on any of the surveys?
Try to answer to the best of your ability. Many questions ask your opinion, so there is no right or wrong answer.
What to do if I need to do something else during the study? (i.e. answering door)
You may exit the site and return when you are ready to continue. Simply click on the link we e-mailed you and you will see the page you exited earlier.
We strongly encourage you to finish each section in one sitting. If you must leave the computer, try to return to the website as soon you can. You may want to plan in advance to make sure there are no distractions while you are online.
How much time do I have to finish each step of the study?
After you are determined eligible to participate, the study consists of three steps. For each step, you will be sent an email with link(s):
Step 1 -- Fill out Survey #1. This survey takes 15-20 minutes to complete. The survey link will be available for 1 week.
Step 2 -- Fill out Survey #2. This survey takes 20-25 minutes to complete. The survey link will be available for 2 weeks.
Step 3 -- View the education website and then fill out Survey #3. The education website takes 30-35 minutes to complete, and Survey #3 takes 20-25 minutes to complete. These links will be available for 2 weeks.
Why are we recruiting people who use American Sign Language (ASL)?
It is very hard to find information about Cancer and Genetics in American Sign Language (ASL) compared to written English.
We want to make information about Cancer and Genetics more accessible in ASL and this can only happen if we include feedback and opinions from people who use ASL in the development of the information.
What internet browser should I use?
You can use Google Chrome or Safari. Internet Explorer and Firefox do not work well with our research materials.
What to do if I have internet problems?
Do not worry if this happens. No information will be lost and you will not need to start over. If you have problems accessing our links, try to reboot your computer or laptop. If the problem persists, and you have access to the modem or router, you may want to reboot the modem or router. To do this, unplug everything, wait a few minutes, then plug everything back in. Another option is to try a different computer or wait a few hours and retry the link(s) with the same computer. To resume, click on the link we e-mailed you. It will take you back to the last page you stopped at.
Another reason why you may be having technical problems is if you are using Internet Explorer or Firefox. So you should use Google Chrome or Safari instead.
What happens if I do not want to continue participating in this study? Can I quit?
You may quit anytime. You have the right as a participant to withdraw from the study at any time. There will be no negative consequences and your decision will be respected. If possible, please let us know if you want to withdraw from the study.
What happens if I cannot complete Survey #1?
We have limited amount of time to conduct this research. If you cannot complete Survey #1 within 1 week of receiving the email link, you will be removed from the study.