Appendix: ENTRANCE EXAM QUESTIONS
Exam Taker Identity
1. Your full name:______
2. True or False: Participants who cheat on this entrance may be disqualified from participating in the Personal Genome Project.
True False
3. What is your date of birth? ______
4. Do you have an identical twin?
Yes No
Project Background
5. The goals of the project include (check all that apply):
Explore ways to connect human genotype and phenotype data
Determine the risks associated with studies like the Personal Genome Project
Develop a fully consented dataset for researchers
Develop tools to help scientists, clinicians, and patients use genomic data
Educate participants and the general public about personal genomics
Create a model system for experts to discuss the implications of personal genomics
Learn about the needs and desires of consumers, clinicians, and researchers
Enrollment Procedure
6. The cost of participating in this study is:
$5000 $2500 $1000 $800 $50 $0
7. True or False: In order to enroll in the PGP a tissue sample (blood, skin, buccal, or saliva) that has been collected in the presence of a licensed health care provider must be submitted to the PGP.
True False
Participation
8. Your participation in the Personal Genome Project is (select one):
Voluntary Required by law
9. The length of participation in this study from the day you enroll is how long?
6 months 1 year 4 years 20 years indefinitely
10. True or False: Once enrolled, you can withdraw from this study at any time.
True False
11. True or False: You can request that your data be removed from the project website at any time.
True False
12. True or False: The PGP may decide to end your participation in this study at any time.
True False
Communication
13. As a participant you are obligated to receive and respond to the following communications from the project (choose all that apply):
requests to speak to the press or media
project updates
incident questionnaire for our DSMC
14. The project will email an "incident questionnaire" with the following frequency: monthly quarterly annually semi-annually as needed
15. The project requests that all "incident questionnaires" be returned within:
one day one week one month one year
Risks of Participation
16. Which of the following are known risks of participation? (check all that apply):
Loss of employment or employability
Loss of insurance or insurability
Loss of privacy
Loss of personal time
Unwanted attention from the media or public
Synthetic DNA identical to yours could be made and planted at a crime scene
Inferences of your paternity or genealogy
Claims of relatedness to historical figures
Claims about your propensity for traits or diseases (including diseases without cures or treatments)
Potential financial costs of medical care, such as seeking diagnostic tests or medical advice, motivated by participation in this project
17. True or False: The genetic and medical information posted on the study website may have relevance to your family members
True False
18. True or False: The PGP recommends that you discuss the above risks with immediate family members prior to enrollment
True False
19. Even if medical advice is not given to participants by the PGP under what circumstances might it appear to be given? (check all that apply)
Web-based interpretation tools which identify genetic variation known to be associated with traits or diseases are made available to PGP participants by anyone who has access to the project data
A scientist, researcher, physician, PGP staff member, or other persons are quoted in a newspaper or magazine about genetic variation associated with a medical condition or trait
Claims about the medical conditions, such as predisposition to disease, are made about specific PGP participants in an online forum or blog.
20. If this study or some third party claims (possibly incorrectly) that you have a predisposition to a terrible medical condition what will you do?
Immediately take a drug or surgery
Consult a physician or other licensed health care professionals, such as a genetic counselor
Seek medical diagnostic testing
Tell everyone in the family to start putting their affairs in order
21. If you are running for political office and some anonymous sympathizer for your opponent leaks to the press that your DNA predisposes you to a psychiatric problem that makes you unfit for office, what would you do?
Withdraw from the election
Sue the opponent
Prepare a scientific and/or political rebuttal
22. If your national or local laws prevent job or insurance discrimination based on genetics does this mean that you will not ever experience discrimination?
Yes, and that means I have the right to take on a job that is bad for my health
No, but I can sue anyone who does try to discriminate in ways that are inconsistent with the laws
It means that I can sue anyone who doesn’t hire me or give me an insurance policy because there are no reasons to reject me other than discrimination
Data Collection
23. Before a participant is sequenced, which of the following medical and non-medical information will be collected by the PGP study team? (check all that apply)
full face image
name
height
weight
blood pressure
date of birth
medication use
medical history (conditions and diseases)
ethnicity
diet
24. True or False: Signing the informed consent document constitutes your authorization for the PGP to access your "protected health information" under the Health Insurance Portability and Accountability Act (HIPAA)
True False
25. True or False: You may revoke authorization for the PGP to access your "protected health information" at any time
True False
Intellectual Property
26. True or False: Your genome, phenome, and other data collected by this project may be used to develop diagnostics, therapeutics, software, or other products by anyone with access to the data and they may seek to have their work protected by intellectual property rights, such as patents.
True False
Benefits of Participation
27. The PGP will provide the following medical services to all participants (choose all that apply):
Medical advice
Consultation with medical staff about your personal health or medical issues
None of the above, the PGP will not provide medical services to participants
28. True or False: DNA sequences, including yours if you enroll, posted on the study website may contain errors:
True False
29. True or False: The PGP recommends that the DNA sequences generated as part of this project should be used for medical purposes, such as the diagnosis or treatment of disease.
True False
Disclosure
30. True or False: The PGP requires genome and phenome data of participants to be published on a publicly accessible website
True False
31. Which of the following statements best represents your level of comfort with publishing your genome and phenome data on a publicly accessible website:
Very comfortable
Somewhat comfortable, but have significant reservations or worries
Not comfortable at all
32. True or False: Once your data is posted on the internet or shared with the research community, even if you request to have your data removed from the study, it is impossible to confirm whether your data is fully removed.
True False
33. True or False: Your genome and phenotype data will be sent to your health care provider by the Personal Genome Project.
True False
34. True or False: Participants are required to learn about medical conditions they may be at increased risk according to interpretations of their genome sequence.
True False
35. Study results may be published in medical books, journals, on websites, or used for teaching purposes. Identifying information collected during this study may appear in any of these materials, including the following (check all that apply):
name
photograph
medical data
non-medical data
your phone number
genomic data
Basic Genetics
36. What are the odds that your child will inherit a specific DNA basepair variation from you? (check the best answer below)
1%
25%
50%
100%
0%
Completely unknown
37. If the above basepair is inherited, under what conditions is the trait associated with it likely to be missing your child? (check all that apply)
If the trait is recessive and the other parent does not carrier a similar variation
If the genetic effect has low penetrance
If most members of the family have the trait
Under no conditions will the trait be missing, the child will definitely express the trait associated with the basepair variation