Does knowing personal genomic information change behavior?

Nate CiraGene 2106/5/2012

Importance

• Are there benefits to testing?• Are there risks from testing?• Should people be tested?• Should tests be regulated?• Relation to other medical risk factors?

Class Related Anecdotes

• Robin Starr– Breast cancer

• Rosalind Chuang– Denial and Insistence

• Steve Quake– Statins

Single Alleles

• 35 article review• Including colorectal cancer, Alzheimer’s,

breast and ovarian cancer• Short term distress and anxiety• Slightly increased screening• Perceived risk increases then returns to

noncarrier by a year

Heska et al. Genetics in Medicine. 2008

Scripps StudyNavigenics test6 month follow-up~2000 surveyedLarge dropout

Bloss et al. NEJM 2011

Keyan’s survey

• Initial 210 class• Found better learning in those genotyped• Submitted for publication

This year’s survey: Population

• Population• 19 responses• 16 were genotyped/3 were not• 9 female/10 male

Behavior: Exercise

Decreased No change Increased0

2

4

6

8

10

12

14

16

0

14

1

Did you change your habits as a result of learning your genomic information with

regard to exercise?

Behavior: Diet

Worsened No change Improed02468

1012141618

Did you change your habits as a result of learning your genomic information with

regard to diet?

Behavior

Researc

hed a co

ndition

Sough

t medica

l advic

e

Sough

t additional

testing

048

1216 14

0 0

Which of the following did you do as a result of learning your personal genomic

information?

Outlook: Non-health

No Change

Change

d Somewhat

Change

d Sign

ificantly

02468

1012 10

6

0

Did knowing genetic information change your outlook on non-health re-

lated aspects of your life?

Outlook: Health

No chan

ge

Change

d Somewhat

Change

d Sign

ificantly

02468

1012

5

11

0

Did knowing your genomic information change your outlook on your peronal

health?

Outlook: Anxiety

Less

anxio

us

Somewhat

less an

xious

No chan

ge

Somewhat

more anxio

us

More an

xious

02468

1012

0

3

11

20

Has knowing your genomic information changed anxiety in your life?

Sharing

Doctor Genetic Counselor

Friends Family Gene210 Classmates

02468

1012141618

10

13

16

7

Who did you share your genomic in-formation with?

Anticipation

Nervous Excited Calm0

2

4

6

8

10

12

14

6

13

1

When you first opened your results were you?

Engagement

Less

engage

d

Smewhat

less enga

ged

Equally e

ngage

d

Somewhat

more engage

d

More enga

ged

0

4

8

12

0 0 0

13

3

How has your engagement been influenced by knowing your personal genomic informa-

tion?

Pressure

Yes No02468

101214161820

1

18

Did you feel pressured to be genotyped?

Yes No02468

1012141618

0

16

Did you feel pressured to nonanonomously

share genomic informa-tion?

Genotyping

Yes No0

2

4

6

8

10

12

14

16

1816

0

Would you recommend others be genoyped?

Conclusions

• Sample size• Self-reporting• Short term• Links between gender and anxiety• Representative?• Other medical risk factors?

Questions

?

Thoughts

• Bias against improved health and exercise• Might in future insist on extra testing• Small sample size• Self reporting• All people changing anxiety were female

• 'Does knowing personal genomic information change behavior?' - Why is this question important - Studies on single alleles (BRCA, ect.) - Scripps study and associated literature - Keyan's survey - Anecdotes from Robin, and Steve Quake - Results from my survey - Summary and concluding remarks