Attach 14

Attach 14. Celebrities, Prescription Drugs & Salmon-McBride.pdf

Genomics and Society Public Surveys (NHGRI)

Attach 14

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This survey should take approximately 20 minutes to complete

Your chance to tell us what you think is important to know about genetics
A. First, how familiar are you with words related to genetics
Each of the words below are words that you may or may not be familiar with. For each, please rate how familiar you are with
each word. Marking “7” on the scale reflects that you are very familiar, marking “1” on the scale means that you are not
familiar. Please circle the number that best reflects your opinion.
1.

Genetic:

0--------------1--------------2--------------3--------------4--------------5--------------6--------------7
Not at all familiar

2.

Chromosome:

0--------------1--------------2--------------3--------------4--------------5--------------6--------------7
Not at all familiar

3.

Susceptibility:

Mutation:

Variation:

Abnormality:

Heredity:

Sporadic:

Completely Familiar

0--------------1--------------2--------------3--------------4--------------5--------------6--------------7
Not at all familiar

8.

Completely Familiar

0--------------1--------------2--------------3--------------4--------------5--------------6--------------7
Not at all familiar

7.

Completely Familiar

0--------------1--------------2--------------3--------------4--------------5--------------6--------------7
Not at all familiar

6.

Completely Familiar

0--------------1--------------2--------------3--------------4--------------5--------------6--------------7
Not at all familiar

5.

Completely Familiar

0--------------1--------------2--------------3--------------4--------------5--------------6--------------7
Not at all familiar

4.

Completely Familiar

Completely Familiar

0--------------1--------------2--------------3--------------4--------------5--------------6--------------7
Not at all familiar

Completely Familiar

B. Rate how important you think it is to learn about genetics
How important is it to you to learn more about how your genes -- the characteristics that are passed from one generation
to the next -- affect your chance of getting certain health conditions?
SCALE

Very unimportant

Neither important or unimportant

Very important

1.
1

3

4

7

2









5

6







C. Scenarios you may encounter
Below are four scenarios in which you might be called upon to use what you know about genetics to address a problem. For
each of the scenarios, please rate how confident you are based on what you know about genetics right now that you could
do so effectively. [Note: We would like these four scenarios to be presented to the respondents in a random order]
Jury Duty: You are selected for a jury. The suspect in the case is on trial for murder. Bloody fingerprints left at the
scene provided small fragments of DNA. The DNA found at the scene shows there were two people with distinct
genetic profiles.
1.

Based on what you know right now about genetics, how confident are you that you would be able to decide the
suspect’s guilt or innocence?
0----------------1----------------2----------------3----------------4----------------5----------------6------------------7
Not at all confident

Completely confident

Cosmetic Product: You run across a a product called Skintype ID. For $100, you can send a saliva sample and have
your DNA tested. The personalized report will tell you whether you have versions of genes that increase the likelihood
that your skin will wrinkle more than other people.
2.

Based on what you know right now about genetics, how confident are you that you would be able to decide whether or
not the claims made are true?
0----------------1----------------2----------------3----------------4----------------5----------------6------------------7
Not at all confident

Completely confident

Genetically modified foods: A company has recently patented a genetically modified salmon called GeneAdvantage
that is able to reproduce more often and is less expensive per pound than other types of salmon.
3.

Based on what you know right now about genetics, how confident are you that you would be able to decide whether or
not to choose GeneAdvantage over other types of salmon?
0----------------1----------------2----------------3----------------4----------------5----------------6------------------7
Not at all confident

Completely confident

Family Health Testing: You want to learn about conditions that might run in your family. You bought a DNA testing kit
from a company that will provide you with results about your health risks. The report came back that you have a gene
version that doubles your risk for developing dementia at a younger than average age.
4.

Based on what you know right now about genetics how confident are you that you would be able to understand how the
results will impact your children’s risk for the condition?
0----------------1----------------2----------------3----------------4----------------5----------------6------------------7
Not at all confident

Completely confident

Celebrity: You read that a famous actress learned she has a “faulty” gene that greatly increases her risk of breast
cancer. She has decided to have double mastectomy to reduce her risk.
5.

Based on what you know right now about genetics, how confident are you that you could judge whether her
decision was justified or not?
0----------------1----------------2----------------3----------------4----------------5----------------6------------------7
Not at all confident

Completely confident

Drug Prescription: You are told by a doctor that you have a serious medical condition. The doctor tells you that
because of differences in genetic variation, there is only one drug to treat the condition that will work for people from
your racial group.
6.

Based on what you know right now about genetics, how confident are you that you could tell whether the doctor’s
recommendation was justified or not?
0----------------1----------------2----------------3----------------4----------------5----------------6------------------7
Not at all confident

Completely confident

D. In your opinion, what’s important to know about genetics
Sometimes it is easier to understand what you read or hear about genetics if you have some background information about
the topic. Would background information about any of the facts below help you understand what you hear or read about
genetics in sources like TV, newspapers or the internet? Please select a ‘yes’ or ‘no’ for each of the following statements?
1.

How many genes you have:

YES

NO

2.

How variations in genes make individuals different from each other:

YES

NO

3.

Where genes are located in the body:

YES

NO

4.

How genes influence biological processes such as digesting food or carrying oxygen in the blood:

YES

NO

5.

What the relationship is between genes and chromosomes:

YES

NO

6.

How changes in genes influence the development of diseases:

YES

NO

7.

How genes are turned on and off, by the environment, physical development, and health habits:

YES

NO

8.

Whether an individual’s physical or personality attribute is affected by only one or multiple genes:

YES

NO

9.

How DNA develops errors that influence the development of disease:

YES

NO

E. Rate your confidence
Now I’d like for you to think about the area of genetics and health. On a scale from 1 to 7 where 1 is Strongly disagree and 7
is Strongly agree, please rate your response to each statement.
You are confident in your ability to understand information about genetics.
1.

1---------------------2----------------------3-------------------------4--------------------------5-------------------6--------------------7
Strongly disagree

Mainly disagree

Somewhat disagree

Neither agree nor disagree

Somewhat agree

Mainly agree

Strongly Agree

It would be easy for you to get information about genetics if you wanted to.
2.

1---------------------2----------------------3-------------------------4--------------------------5-------------------6--------------------7
Strongly disagree

Mainly disagree

Somewhat disagree

Neither agree nor disagree

Somewhat agree

Mainly agree

Strongly Agree

You would be able to understand information about how genes can affect your health.
3.

1---------------------2----------------------3-------------------------4--------------------------5-------------------6--------------------7
Strongly disagree

Mainly disagree

Somewhat disagree

Neither agree nor disagree

Somewhat agree

Mainly agree

Strongly Agree

You have a good idea about how genetics may influence risk for disease generally.
4.

1---------------------2----------------------3-------------------------4--------------------------5-------------------6--------------------7
Strongly disagree

Mainly disagree

Somewhat disagree

Neither agree nor disagree

Somewhat agree

Mainly agree

Strongly Agree

You have a good idea about how your own genetic make-up might affect your risk for disease.
5.

1---------------------2----------------------3-------------------------4--------------------------5-------------------6--------------------7
Strongly disagree

Mainly disagree

Somewhat disagree

Neither agree nor disagree

Somewhat agree

Mainly agree

Strongly Agree

You would be able to explain to others how genes affect health.
6.

1---------------------2----------------------3-------------------------4--------------------------5-------------------6--------------------7
Strongly disagree

Mainly disagree

Somewhat disagree

Neither agree nor disagree

Somewhat agree

Mainly agree

Strongly Agree

F. How good are you with numbers?
For each of the following questions, please circle the number that best reflects your opinion of how good you are at doing the
following.
How good are you at working with fractions?
1.

0--------------1--------------2--------------3--------------4--------------5--------------6----------------7
Not at all good

Extremely good

How good are you at figuring out how much a shirt will cost if it is 25% off?
2.

0--------------1--------------2--------------3--------------4--------------5--------------6----------------7
Not at all good

Extremely good


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