Genetic Information in the Mass Media
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Genetic Information in the Mass Media

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  • As the media cover each new result, the public is again forced to think about genetics Most members of the public have very little experiential knowledge of genetics and therefore will rely on the media to provide knowledge and frame the issue
  • “ with this knowledge comes power” (Navigenics) [1] , “we believe that your genetic information should be controlled by you” (23andMe), and “your genes. Your health. Your choices” [1] Company websites may be found at: http://www.navigenics.com/ , https://www.23andme.com/ , http://www.dnadirect.com/web/
  • More than 30 companies offering DTC genetic genetic testing as of March 2008 – this has likely changed as it is a volatile industry with companies changing names, new companies developing, and existing companies changing the panel of tests they offer. Test range from paternity, nutrigenomic, and risk analysis I am not talking about clinical genetic testing – there are 1000’s of genetic tests available, most for clinical uses in single-gene disorders, for diagnosis, etc. (genetests.org).
  • Most of the DTC genetic testing companies have launced advertising campaigns along the lines of the Myriad Genetics DTC campaign which is basically a pharmaceutical advertisement for a genetic test. These companies instead rely on mass media coverage and their web presence
  • Specific aims of study – funded by CRN pilot funds Media analysis over one year focusing on genetics of common disease and DTC genetic tests Focus groups for public opinion on this issue
  • Mass media = major newspapers, web blogs, television Removed: ancestry testing, pediatric testing, paternity testing, psychiatric testing, food testing, cloning, forensic genetics.
  • Sept = BRACAnalysis ads in the northeast Nov = 23andMe, Decodeme launched Mar = Navigeneics launched May = GINA signed into law Jun = CA issued cease and dissist order to stop marketing (they didn’t), New York considering same. Sept-oct = 23andMe (retail DNA test) time magazines #1 innovation of the year
  • 3 main companies – 2 run by scientists one run by venture capitalists
  • IF there is evidence of a struggle or a maintaining of the current dominant discourse around the issue of genetics in the mass media – this has implications for the public moving forward. If the determinisitic agenda, focus on biomedical model and individual responsibility for health prevail without opposition – this will affect the frame of the public over time (since this is where their first information about genetics comes from) If there is evidence of struggle, new frames of caution and medical provider intervention (by proper medical providers) may have the opportunity to influence public opinion and reduce the hypothesised harm to the public if the progressive, miracle, empowered frames are allowed to continue unabated.

Genetic Information in the Mass Media Genetic Information in the Mass Media Presentation Transcript

  • Genetic Information in the Mass Media Alanna Kulchak Rahm Kaiser Permanente Colorado HMORN 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 growing
    • Benefits
      • 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 trial  clinical 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
  •  
  • Mass Media Types
  • Mass Media Topics
  • DTC Companies
  • 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?