PGT companies use a combination of marketing rhetoric, and unsupported claims and research evidence to promote their product. In many cases, there is no clinical support. The ability of these tests to accurately predict outcomes (clinical validity) is variable. Consumers are faced with a difficult task of determining the credibility of these tests.
The technology around PGT is changing rapidly, as is the variety of testing. Given the international reach of PGT, regulation of the industry is challenging.
There are many who support PGT as a means of empowering consumers to proactively manage their health (ie clinical and personal utility). Others suggest individuals may be misled by information with poor clinical validity, leading to unnecessary costs that are a burden to the consumer and health system.
Privacy and confidentiality
Information obtained by an individual can have implications for other family members, especially those who may not want to know. Given the ease of testing, some people (eg children) may be tested without full consent.
The ownership of the data from testing is another complex issue. If a testing company changes ownership, so does the data. Some consumers choose to share their genetic information or data (eg online) which can also allow for unintentional access by others.
For many individuals, the concept of personal utility seems more relevant than the clinical utility of testing. Personal utility includes the value of increased knowledge about oneself (where curiosity often motivates individuals wanting to be tested), increased knowledge about the trait or condition tested, potential for anticipated coping, and altruism (eg helping research as a motivation for testing, with opportunities for data sharing through not-for-profit websites or organisations).5,6