Direct-to-consumer genetic testing is supposed to let consumers know if they are predisposed to certain diseases or conditions – but is this information ultimately helpful or harmful? That’s the question a researcher from The Australian National wants to answer in a new study.
Genetic tests marketed directly to consumers – also known as DTC genomic tests – are becoming more common in Australia and around the world. “Yet there is still very little regulation around this kind of testing, so we have very little information about whether or not the results are useful to people, or if they’re viewed as just another piece of incomplete health information, or if they actually lead to harmful outcomes like increased anxiety,” says PhD candidate Sudeepa Abeysinghe from the School of Social Sciences at ANU.
DTC genomic tests are commonly marketed over the internet, offering to scan a person’s DNA for markers including: illnesses, such as breast cancer or schizophrenia; personal attributes, such as IQ or propensity towards alcoholism; or quirky facts, such as perception of bitter tastes.
Ms Abeysinghe is calling for people who have taken a DTC test to participate in a new study looking at how they perceived the test and its results, with a focus on how they reacted to the information gained from the test. Participants in the study need to be 18 year or older. They will complete an online survey, which may be followed up by an in-depth telephone interview with Ms Abeysinghe.
“As yet, the reaction of everyday people to these kinds of tests remains unknown,” she says. “Do the people who take a DTC genomic test feel they’ve lost part of their privacy? Do they experience any stigmatisation or discrimination based on the results?”
Ms Abeysinghe says that while the Australian Therapeutic Goods Administration released draft guidelines for the regulation of some kinds of genomic tests in 2007, and other regulatory measures have been proposed, these have yet to be implemented. She says that answering the questions posed in her study will be crucial for informing future regulation around the growing genome testing industry.
“Then there are larger questions to do with regulation. Should people’s genetic information be stored and maintained by commercial entities? Does too much regulation inhibit an individual’s freedom to know about their own genetic information? It’s important that we know more about the experiences of individuals so we can make decisions as a society about how we want to handle direct-to-consumer genomic testing.”
The online survey can be found at: https://apollo.anu.edu.au/default.asp?pid=3937
