Genetic Information in the

Mass MediaAlanna Kulchak Rahm

Kaiser Permanente ColoradoHMORN April, 2009

Background

September, 2007 BRACAnalysis® DTC advertising campaign

Personalized medicine and genetics are seeing increasing coverage in the media National “awareness months” GWAS study results

Background

Genetics in the Mass Media

Previous studies 100 articles/year <1988 (NYT/WP only) 200 articles/year > 1988 >8000 articles on genetic influence of disease and

behavior in mass media 1997-2003

Frames Progressive, miracle technology Biomedical, deterministic Empowerment

Ten Eyck (2003) Capella et al (2005)

DTC Genetic Tests

November, 2007 – April, 2008 23andMe, DeCODEme, Navigenics offering “full genome scans”

$730 million industry in 2007 and growingBenefits

Individual responsibility for health Anonymity against discrimination

Risks Limited clinical utility, unknown reliability of tests Complex results without provider to interpret Disrupts trajectory basic science clinical trialclinical use

The State of the Science Today

• Very little known about effects of the media related to DTC genetic tests

• Policy recommendations and power struggles over potential harm to consumers

• No information on consumer awareness, consumer agenda, consumer use, effect of media messages on consumers

• CRN pilot project

2007 – 2008 coverage

• >1000 articles on genetics found in the mass media

• Removed topics not related to DTC genetic testing and genetics of common disease

• 173 reports on DTC genetic tests, common disease risk, policy around genetic tests

0

5

10

15

20

25

30

35

40

45

Co

un

t

Sep Oct Nov Dec Jan Feb Mar Apr May Jun Jul Aug Sep

Date

Media Coverage of Genetics Sept 2007 - Sept 2008

Mass Media Types

PUBLICATION TYPE NumberNewswire 77Web Blog 31Newspaper 25Online Publi.. 9Television Transcript 9Abstract 5Web Publication 5Magazine 4Meeting 4Journal 2Report 2Newsletter 1Reference 1

Mass Media Topics

TOPIC NGINA 50DTC genetic testING 37regulation of testing 31genetic testing-general 25concerns of genetic testing 15BRCA1/2 12personalized medicine 4BRCAnalysis Advertisement 2genetic counseling 1

DTC Companies

Company Mentions 23andMe 91Navigenics 49deCodeMe 23

Next Steps

Research Question 1: How important is the issue of DTC genetic testing and advertising in the mass media and among audience members?

Research Question 2: How do the mass media frame the issue of DTC genetic testing and how do individuals understand this issue?

Research Question 3: Do individual perspectives about issue salience and issue frames differ by population group?

Research Question 4: How are the mass media being used as a field of power by proponents of the DTC genetic testing issue?