Study Title: Attitudes, beliefs, and knowledge related to medical care and research (United States of America)

Principal Investigator: Dr. Timothy Dye

Description: Complete a survey about attitudes toward health information and research. This survey applies ONLY to residents in

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Section 1: Demographic questions

1. What country do you currently live in
2. What country were you born in?
3. My gender is
4. What is state do you currently reside in?

Section 2: Health Attitudes

Each item below is a belief statement about your health with which you may agree or disagree. This is a measure of your personal beliefs; there are no right or wrong answers.

1. If I get sick, it is my own behavior which determines how soon I get well again
2. No matter what I do, if I am going to get sick, I will get sick
3. Having regular contact with my physician is the best way for me to avoid illness
4. Most things that affect my health happen to me by accident
5. Whenever I don't feel well, I should consult a medically trained professional
6. I am in control of my health
7. My family has a lot to do with my becoming sick or staying healthy
8. When I get sick, I am to blame
9. Luck plays a big part in determining how soon I will recover from an illness
10. Health professionals control my health
11. My good health is largely a matter of good fortune
12. The main thing which affects my health is what I myself do
13. If I take care of myself, I can avoid illness
14. Whenever I recover from an illness, it's usually because other people (for example, doctors, nurses, family, friends) have been taking good care of me
15. No matter what I do, I'm likely to get sick
16. If it's meant to be, I will stay healthy
17. If I take the right actions, I can stay healthy
18. Regarding my health, I can only do what my doctor tells me to do

Section 3: Questions about experience with genetic testing

We would like you to now answer some questions about your experience with genetic testing.

Genetic testing, also known as DNA testing, allows individuals and medical professionals to determine how vulnerable a person might be to certain diseases. For example, individuals with a certain gene in their DNA may be more likely to get certain types of cancer. DNA testing could be used for other many reasons, such as determining a child's biological mother or father, or identifying where your biological ancestors are from.

1. Have you ever heard of genetic testing before now?

2. Have you ever had a genetic test done on yourself?

3. Do you know anyone with a genetic disorder (for example Down's Syndrome, Haemophilia, Sickle-cell disease)?

4. Do you know anyone (e.g. partner, child) who has had a genetic test done?

5. Have you ever had a genetic test done to better understand your ethnic or ancestral background?

6. How did the results of this genetic testing impact your behavior or outlook in anyway? Please describe:

7. If you have not had a genetic test done, please select your reasons why not (check all that apply):

8. If a genetic test was available to you at a minimum cost, how likely are you to have it done?

9. How likely are you to get a genetic test?

10. What do you think are the benefits to genetic testing?

11. What do you think are the risks to genetic testing?

Section 4: Beliefs and attitudes

You will now read a series of statements and use options provided to share how much you agree or disagree with each statement.

We use the term "health care provider" to mean someone from whom you get medical care (e.g. doctor, nurse).

1. I am curious about my genetic make-up
2. I do not want to know what kind of diseases I could get in the future
3. Genetic tests deprive people of their freedom to live as they want
4. Genetic testing does more good than harm
5. Knowledge about the genetic background of disease will help people live longer
6. Genetic testing is tampering with nature
7. The use of genetic testing among people should be promoted
8. The use of genetic testing should be available for those who want to use them
9. More money should be available for the development of genetic tests
10. Genetic tests should be offered to all pregnant women
11. If it were easy and cheap for my health care provider to do genetic testing, I would want to know the results
12. If my health care provider knew the outcomes to my genetic testing, I would want to know the results

Section 5: Genetic Testing in the Future

You will now read a series of statements about expected outcomes from genetic testing. Please use the options provided to share how likely or unlikely you think these outcomes are.

very unlikely unlikely neither likely nor unlikely likely very likely choose not to answer
1. Eventually, everyone will have genetic testing done
2. Our genetic information will be stored in computers (databanks)
3. All children will be tested at young age to find out what diseases they will get later in life
4. Future employees will have to do genetic testing before they are hired
5. There will be two sides to our society-people with "good" genes and people with "bad" genes
6. Insurance companies will ask for a genetic test before the amount of the premium is set

Section 6: Genetic research

We would like you to now answer some questions about genetic research.

Genetic research is when researchers collect your DNA (through saliva, blood, or other tissues) to explore a link between people's genetic makeup and their risk for certain health outcomes.

Please use the options provided to share how likely or unlikely you are to participate in genetic research.

very unlikely unlikely neither likely nor unlikely likely very likely choose not to answer
1. I would participate in research that used my DNA
2. I would participate in research where my DNA was used for something other than the main study goal
3. I would allow my DNA to be shared with a private company
4. I would allow my DNA to be used to create cell lines-these would allow for my DNA to be used in future studies

Section 7: Beliefs about genetic research

We would like you to now answer some questions about why you might or might not participate in genetic research. Please use the options provided to share how strongly you agree or disagree with the following statements.

1. I don't know enough about genetic studies and what can be done with my DNA to feel comfortable participating
2. I do not believe my information would be kept private
3. Someone might see what genetic disease I may be at risk for and use the information against me
4. Being part of a genetic study might lead to discrimination from jobs, insurance, or access to health care
5. There is no benefit to me or my family
6. I might think too much about the results
7. I don't trust researchers
8. Genetic research could help find new treatments
9. It may help my children or future families
10. It would help us understand inherited diseases

Section 8: Concerns about genetic research

1. My concerns about participating in genetic studies include (check all that apply):

Section 9: Demographic questions (round 2)

1. What is your age?  

2. Please identify your race/ethnicity (check all the apply):
  
  
  
  
  
  

3. Please identify your ethnicity.  

4. What best describes your education:
  
  
  
  
  

5. Do you own a car?

6. Do you own a home?

7. What is your present religion, if any (check all that apply)?

Section 10: Health questions

1. Would you say that in general your health is:  

2. Now thinking about your physical health, which includes physical illness and injury, for how many days during the past 30 days was your physical health not good?
3. Now thinking about your mental health, which includes stress, depression, and problems with emotions, for how many days during the past 30 days was your mental health not good?
4. During the past 30 days, for about how many days did poor physical or mental health keep you from doing your usual activities, such as self-care, work, or recreation?

Section 11: Ethical views

You will find a series of general statements listed below. Each represents a commonly held opinion and there are no right or wrong answers. You will probably disagree with some items and agree with others. We are interested in the extent to which you agree or disagree with such matters of opinion.

Please read each statement carefully. Then indicate the extent to which you agree or disagree by using the options provided

1. A person should make certain that their actions never intentionally harm another even to a small degree
2. Risks to another should never be tolerated, irrespective of how small the risks might be
3. The existence of potential harm to others is always wrong, irrespective of the benefits to be gained
4. One should never psychologically or physically harm another person
5. One should not perform an action which might in any way threaten the dignity and welfare of another individual
6. If an action could harm an innocent other, then it should not be done
7. What is ethical varies from one situation and society to another
8. Moral standards should be seen as being individualistic; what one person considers to be moral may be judged to be immoral by another person
9. Different types of moralities cannot be compared as to "rightness"
10. Questions of what is ethical for everyone can never be resolved since what is moral or immoral is up to the individual
11. Moral standards are simply personal rules which indicate how a person should behave, and are not to be applied in making judgments of others

Section 12: Final question

1. Do you have any other opinions or ideas about genetic testing or research that you would like to tell us?

Section 13: Survey quality

We would now like to ask you a few questions about this survey to improve it in the future. If you have specific questions you would like to point out please copy and paste the question in the text field.

1. In general, the questions in this survey were "understandable." That is, did you have to read the questions more than once to understand what it was asking?

2. Were there any specific questions that were particularly difficult to understand? If yes, please specify (as best you can):

3. In general, the meaning of the questions were clear and straightforward

4. Were there any specific questions that the meaning was unclear? If yes, please specify (as best you can):

5. The scales that were used to answer the questions were adequate. That is, do you feel the scale provided you with an appropriate way to respond?

6. In your opinion, were any of the questions written in such a way that there was ONLY one OBVIOUS answer for you? If yes, please specify:

7. Any other comments you wish to make about this study: