April 1, 2019

Is it time for public education on DNA testing?

by Andrea Philips in News

DNA or ‘genomic’ testing and research has been in the spotlight recently with the Australian Government’s commitment to more than $65 million for research grants to unlock the power of personalised medicine through genomics.1

This new field of medicine, which analyses individuals’ DNA to determine how to best target treatment, is becoming more widely used in Australia – but are we equipped to deal with the results?

A YouGov Galaxy Predictors 2019 Study commissioned for Red Agency’s 2019 Red Sky Predictions Report has found more than two million Australian adults – 10% of the population – have had a DNA test, giving up their unique genetic code, despite concerns about privacy or being cloned.2

Helping our health and accessing our ancestry are the main motivators for finding out our DNA breakdown. Finding out about our family tree was reported in the study as the second highest benefit (44%) of DNA testing.  ‘Health’ factors accounted for three of the top four advantages of DNA testing, with identifying potential health risks (55%) seen as the number one benefit, followed by better monitoring by health providers (35%) and modifying DNA to prevent or cure a disease (30%).2

DNA’s potential to guide our health knowledge and management is tempered by caution, with privacy our biggest worry. Half of us are concerned about our DNA falling into the wrong hands (53%), being used by health insurance companies for higher premiums (40%) or making us vulnerable to identity theft (38%).2

One in four (25%) Millennials and Gen Xers, and one in five (20%) Baby Boomers worry they could be cloned from their test sample without their knowledge.2

Although almost four in ten (38%) Australians are concerned their DNA could be used for marketing purposes, half (49%) would be interested in receiving marketing information based on their DNA results. Health-focused offers are the most keenly sought marketing information among both the already-tested and the interested-in-being-tested.2

Interestingly, for a public wary of how private health insurance companies might use DNA test results, almost one in five (19%) want to hear about the health insurance product most suited to their DNA.2

A review article in the latest issue of Australian Journal of General Practice cautions that a positive test result for a genetic condition may adversely affect a person’s ability to secure a life insurance policy. Importantly, this does not apply to private health insurance in Australia, which is not risk-rated.3

Bridging the knowledge-to-action gap

The YouGov findings follow hot on the heels of a publication in the European Journal of Human Genetics by the Genioz study group, a team of Australian and international researchers who investigated knowledge, attitudes and experiences with personal genomic testing.4

The Genioz research found Australians aged between 25 and 49 years were more likely to have pursued a form of carrier testing for specific genetic conditions, while those aged 50 years or older were most likely to have pursued ancestry testing. The authors noted that, in Australia, there is no recognised carrier screening program built into “regular” clinical management.  If a person wants carrier testing in the absence of a family history of health issues, they are likely to seek a commercially marketed test.

Issues can arise when people purchase genomic information from a commercial company and bring their results to their trusted healthcare professional for advice. The authors wrote that there was the risk of misinterpretation of results, and difficulty accessing doctors with genomic expertise.  Other considerations are who pays for the tests and the implications of genomic testing for life insurance policies.

This points to a need for education and better communication to increase understanding and help guide consumer-healthcare professional conversations and decision making. In Australia, we can see some steps are being taken to address the communications gap:

  • An e-learning modulein partnership between the Garvan Medical Research Institute’s Kinghorn Centre for Clinical Genomics and the Royal Australasian College of Physicians was announced in January, designed to introduce physicians to clinical genomics given they are at the frontline in identifying when people may benefit from genomic testing, discussing testing and results with them, working with laboratories and acting on results.
  • The Royal Australian College of General Practitioners has developed the Genomics in General Practice resource, which provides short, practical summaries about common genetic conditions and genetic tests.
  • Back in 2014 the National Health and Medical Research Council produced a consumer guide on direct-to-consumer genetic DNA testing. More recently the Australian Genomics Health Alliance has also developed a useful information portal on genomic testing for the public.

Surely the time has come for a public education campaign?

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SOURCES:

  1. http://www.health.gov.au/internet/ministers/publishing.nsf/Content/health-mediarel-yr2019-hunt050.htm [Last accessed March 2019]
  2. Wright, J. et al. 2019. Red Sky Predictions YouGov Galaxy Report. Red Agency. Available online: redagency.com.au [Last accessed March 2019]
  3. Otlowski, M et al. 2019. Genetic testing and insurance in Australia. Australian Journal of General Practice. 48(3):96-99.
  4. Savard, J et al. 2019. Australians’ views and experience of personal genomic testing: survey findings from the Genioz study. European Journal of Human Genetics. Available online: https://www.nature.com/articles/s41431-018-0325-x [Last accessed March 2019]