Presented By:

Alanna Kulchak Rahm, MS, PhD(candidate)

Abstract:

Background:  Consumers are routinely exposed to information about new gene discoveries and direct-to-consumer (DTC) advertising of genetic tests.  Since 2008, the BRACAnalsysis® test for breast cancer risk has been steadily advertised directly to consumers in different markets across theUS, and at least 3 companies now offer DTC genetic screening for $300 – $1000.  This project aims to: 1) determine how individuals understand the issue of genetic testing and DTC genetic tests, and 2) to determine how individual perspectives about issue salience and issue frames differ by population group.

Methods: Fourteen focus groups were conducted with Kaiser PermanenteColoradomembers in 2009 by concordant population groups.  Focus groups included general population KPCO members who self-identify as White, self identify as African-American, self-identify as Hispanic/Latino, women with a recent referral for BRCA1/2 testing, and 4 provider groups.  Questions were asked to determine individual perspectives and public opinion about the importance and value of genetic tests, DTC genetic testing, and DTC advertising of genetic tests.

Results:  Transcripts were coded for polarity (positive/negative) of opinion on genetic testing and DTC genetic tests.  Additional coding for how different population groups frame opinions on the issue (progressive, deterministic, caution) was conducted to determine whether frames differ across population groups.

Conclusions: Individual opinions about the value of family history and genetic testing for disease risk vary greatly, but salience of the issue was similar for most groups.  A sophisticated thought process about evaluating DTC advertising and DTC tests was expressed across patient population groups.