The Ethics of Online Genomics Tests

Abstract

There is a significant difference between the expectation and reality of direct-to-consumer personal genome testing, creating a gap where interesting tensions and ethical dilemmas sit. "They can test for that?” This is often the response when I explain that I study the ethics of genomic tests that consumers can buy online. For the past 7 years I have been studying the field of direct-to-consumer personal genome testing in Australia. This includes following the regulatory changes that have occurred and how they have impacted upon certain companies and the field as a whole. This has been amusing to a degree, as some companies would disappear from the internet only to re-appear with new branding and names a few months later. There has also been a shifting tide of reactions to the field from the media, researchers, clinicians and the academic world. This ranged from scepticism and distrust that this new approach to genomic testing could offer anything of value, and has evolved to the stage where teams of researchers, companies and disease-specific research institutes are now partnering with testing companies to carry out research projects. My work has examined what Australians know, think or expect from this technology. To do this I talked with consumers of the technology and found out what it was like for them to become “genetically aware”.