Appendix: ENTRANCE EXAM QUESTIONS - Harvard University



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.

[pic]True [pic]False

3. What is your date of birth? _________________

4. Do you have an identical twin?

[pic]Yes [pic]No

Project Background

5. The goals of the project include (check all that apply):

[pic]Explore ways to connect human genotype and phenotype data

[pic]Determine the risks associated with studies like the Personal Genome Project

[pic]Develop a fully consented dataset for researchers

[pic]Develop tools to help scientists, clinicians, and patients use genomic data

[pic]Educate participants and the general public about personal genomics

[pic]Create a model system for experts to discuss the implications of personal genomics

[pic]Learn about the needs and desires of consumers, clinicians, and researchers

Enrollment Procedure

6. The cost of participating in this study is:

[pic]$5000 [pic]$2500 [pic]$1000 [pic]$800 [pic]$50 [pic]$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.

[pic]True [pic]False

Participation

8. Your participation in the Personal Genome Project is (select one):

[pic]Voluntary [pic]Required by law

9. The length of participation in this study from the day you enroll is how long?

[pic]6 months [pic]1 year [pic]4 years [pic]20 years [pic]indefinitely

10. True or False: Once enrolled, you can withdraw from this study at any time.

[pic]True [pic]False

11. True or False: You can request that your data be removed from the project website at any time.

[pic]True [pic]False

12. True or False: The PGP may decide to end your participation in this study at any time.

[pic]True [pic]False

Communication

13. As a participant you are obligated to receive and respond to the following communications from the project (choose all that apply):

[pic]requests to speak to the press or media

[pic]project updates

[pic]incident questionnaire for our DSMC

14. The project will email an "incident questionnaire" with the following frequency: [pic]monthly [pic]quarterly [pic]annually [pic]semi-annually [pic]as needed

15. The project requests that all "incident questionnaires" be returned within:

[pic]one day [pic]one week [pic]one month [pic]one year

Risks of Participation

16. Which of the following are known risks of participation? (check all that apply):

[pic]Loss of employment or employability

[pic]Loss of insurance or insurability

[pic]Loss of privacy

[pic]Loss of personal time

[pic]Unwanted attention from the media or public

[pic]Synthetic DNA identical to yours could be made and planted at a crime scene

[pic]Inferences of your paternity or genealogy

[pic]Claims of relatedness to historical figures

[pic]Claims about your propensity for traits or diseases (including diseases without cures or treatments)

[pic]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

[pic]True [pic]False

18. True or False: The PGP recommends that you discuss the above risks with immediate family members prior to enrollment

[pic]True [pic]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)

[pic]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

[pic]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

[pic]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?

[pic]Immediately take a drug or surgery

[pic]Consult a physician or other licensed health care professionals, such as a genetic counselor

[pic]Seek medical diagnostic testing

[pic]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? 

[pic]Withdraw from the election

[pic]Sue the opponent

[pic]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?  

[pic] Yes, and that means I have the right to take on a job that is bad for my health

[pic] No, but I can sue anyone who does try to discriminate in ways that are inconsistent with the laws   

[pic]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)

[pic]full face image

[pic]name

[pic]height

[pic]weight

[pic]blood pressure

[pic]date of birth

[pic]medication use

[pic]medical history (conditions and diseases)

[pic]ethnicity

[pic]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)

[pic]True [pic]False

25. True or False: You may revoke authorization for the PGP to access your "protected health information" at any time

[pic]True [pic]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.

[pic]True [pic]False

Benefits of Participation

27. The PGP will provide the following medical services to all participants (choose all that apply):

[pic]Medical advice

[pic]Consultation with medical staff about your personal health or medical issues

[pic]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:

[pic]True [pic]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.

[pic]True [pic]False

Disclosure

30. True or False: The PGP requires genome and phenome data of participants to be published on a publicly accessible website

[pic]True [pic]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:

[pic]Very comfortable

[pic]Somewhat comfortable, but have significant reservations or worries

[pic]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.

[pic]True [pic]False

33. True or False: Your genome and phenotype data will be sent to your health care provider by the Personal Genome Project.

[pic]True [pic]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.

[pic]True [pic]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):

[pic]name

[pic]photograph

[pic]medical data

[pic]non-medical data

[pic]your phone number

[pic]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)

[pic]1%

[pic]25%

[pic]50%

[pic]100%

[pic]0%

[pic]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)

[pic]If the trait is recessive and the other parent does not carrier a similar variation

[pic]If the genetic effect has low penetrance

[pic]If most members of the family have the trait

[pic]Under no conditions will the trait be missing, the child will definitely express the trait associated with the basepair variation

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