Academic researchers in the US have reported findings from a 2011 public survey of 2,100 members of the public.
A sample of 2,100 nationally representative American adults was surveyed by an independent research company on policy issues in genetics and genomics. Respondents were asked about their general views on policy issues including government spending on genetic research, the Genetic Information Nondiscrimination Act of 2008, GINA (see previous news), and direct-to-consumer (DTC) genetic testing.
82% of those surveyed considered the 2008 antidiscrimination law important, and 65% agreed that delivery of any form of genetic test results should involve a clinician, as advocated by the American College of Medical Genetics and Genomics (see previous news); under 1% had actually purchased any form of DTC genetic test. 57% felt that the government should spend more on genetic research.
Demographic analysis showed that views were in general consistently linked with the gender and political views of respondents, but not their educational status, race or ethnicity. However, better educated people were more likely to say that the genetic antidiscrimination law was important.
The researchers conclude that, based on these findings, clinicians ’should be sure to mention’ GINA to patients who may eschew genetic testing based on groundless fears of genetic discrimination, speculating that high levels of support for this law may ‘embolden legislators to take additional steps in eradicating genetic discrimination’. They also suggest that ‘as clinicians and professional organizations attempt to persuade federal agencies that DTC genetic testing should be more tightly regulated’ they should rely on knowledge that the public supports clinician involvement.
Comment: It would appear based on this survey that the stringent regulation of any form of genetic testing and legal prohibition of any form of genetic discrimination enjoys wide public support in the US. Whether this is a proportionate response to the actual risks and benefits of genetic testing is another question; the distinction between highly predictive testing in the clinical context, and less predictive testing undertaken to inform personal curiosity or lifestyle decisions is not precise. The advent of whole genome sequencing only adds complexity, since distinguishing between different clinical utilities will depend only on the analysis and interpretation offered and not on different testing per se.