General Survey

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General Survey

Whole genome sequencing is a laboratory test that “reads” or shows the exact sequence of all DNA bases (A, C, G, and T) in a person’s entire genome. The genome represents a person’s genetic code, meaning all of their genetic information. This includes genes, which contain instructions for making proteins, as well as the areas of the genetic code that do not give instructions for making proteins (called “non-coding DNA sequences”).


The purpose of this survey is to learn what you think about whole genome sequencing and receiving genetic test results from whole genome sequencing. The findings of this survey will help us better understand how healthy persons, patients, doctors, and health researchers should use whole genome sequencing in the future. We encourage you to use the comment boxes at the bottom of each section of the survey to help us better understand your responses and to give us feedback about the survey. The survey takes about 5-10 minutes to complete.

You are invited to take the survey if you are 18 years old or over. Are you at least 18 years old?

Preferences for genetic information

1.
If you had the opportunity would you have your whole genome sequenced?

2.If you could receive genetic information from whole genome sequencing, what would you want to know?

a.“I would want to receive information about . . .”
YesNoDon't Know
Conditions that are life-threatening and cannot be treated
Conditions that are life-threatening and can be treated
Conditions that are serious (but not life-threatening) and cannot be treated
Conditions that are serious (but not life-threatening) and can be treated
b.“I would like to receive information. . .”
YesNoDon't Know
About how I might respond to different medications or drugs
About my possible risk of diseases later in life
About a non-health trait or characteristic
That I’m a carrier of a genetic condition that I could pass on to my children
About my ancestry
That is uncertain and cannot be interpreted right now

3.If you could receive genetic information about your children, what would you want to learn?

a.If your newborn had a genetic change for an adult onset condition, would you want to know?
b.If your child had a risk variant for an adult onset condition, would you want to know?
c.If you answered “No” to either of these questions, why not? (check all that apply)

4.If you had your whole genome sequenced, should you and your doctor be able to examine your genetic information in the future?

Comments:

Things that would influence my decision to receive results

5.
Physicians may order whole genome sequencing in a number of situations. In what situations would you want to have your whole genome sequenced?

“I would have my whole genome sequenced if . . .” (check all that apply)

6.Whole genome sequencing is an expensive test.

“I would have my whole genome sequenced if . . .”
YesNoDon't Know
My insurance would pay for it.
I had to pay for it.
The government would pay for it.

Comments:

Different ways to receive genetic information

7.Assuming that genetic information from your whole genome sequence is available about a serious or life-threatening condition. How would you be willing to receive this information?

“I would be willing to receive this information through . . .”
YesNoDon't Know
A face-to-face meeting with a genetic counselor
An interactive website, with phone or online access to a genetic counselor
A report sent in the mail
A phone call with a genetic counselor

8.Assuming that genetic information from your whole genome sequence is available about a non-serious or non-life-threatening condition. How would you be willing to receive this information?

“I would be willing to receive this information through . . .”
YesNoDon't Know
A face-to-face meeting with a genetic counselor
An interactive website, with phone or online access to a genetic counselor
A report sent in the mail
A phone call with a genetic counselor

Comments:

Control and access to your genetic information

9.Who should decide what genetic information from whole genome sequencing you should have access to, if you want? (check all that apply)

10.Who should decide what genetic information from whole genome sequencing should or should not be returned to you, regardless of what you want? (check all that apply)

11.Please say if you agree with the following statements:

YesNoDon't Know
Individuals should be able to choose the types of whole genome sequencing results they want to receive.
Health professionals should choose what results should be returned to you.

12.Who should have access to your genetic information? (check all that apply)

YesNoDon't Know
You
Your primary doctor/healthcare provider
Whomever you choose to share it with
Your insurance company or third-party payer
The laboratory that does your whole genome sequencing
Genetic researchers
Your state government
Your federal government

Comments:

Demographic Information

13.Have you ever had genetic testing or whole genome sequencing done before?

14.Do you or your children live with a rare genetic condition?

15.What is your sex?

16.What is your age?

17.Do you have children?

18.How do you typically identify yourself on the U.S. census? Are you Hispanic/Latino?

19.How do you typically identify yourself on the U.S. census? (Please check all that apply)

20.Please describe your formal education.

21.Would you say you are . . .

22.Are you currently . . .

23.How did you find out about the study?

24.Please provide your zip code or postcode:

25.Please use this space to provide any additional comments:

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