Diffusion Characteristics and the Genetic Discrimination Paradox

People are very concerned about genetic discrimination. So are genetic counselors who are spreading the fears. In the paper I examined empirical data regarding genetic discrimination and was very surprised to discover that, in fact, genetic discrimination is rare and if anything it is on the decline. At the same time, although little genetic discrimination is taking place, individuals are extremely afraid of discrimination and, therefore, are deterred from testing (you can find my analysis of the data here). Hence, the genetic discrimination paradox: Genetic discrimination is rare, yet the diffusion of genetic testing is inhibited due to fear of discrimination.

The question I explore is what is it about genetic testing as a technology that made it vulnerable to this paradoxical relationship between privacy protection and diffusion? I believe two diffusion characteristics made genetic testing susceptible to this paradox, and suggest that other technologies that share these characteristics may also be vulnerable to the same paradox.

The first diffusion characteristic is the preventive nature of the technology. Preventive technologies are used to prevent unwanted consequences. The rewards from the use of preventive technologies are often delayed in time or may never occur. The benefits are also relatively intangible. For these reasons, people are less likely to adopt preventive technologies. Genetic testing is a preventive technology. For example, let us take a woman testing to see whether she carries the breast cancer genetic mutation. At most, she will receive the bad news that she is a carrier of the mutation. She still may be unable to prevent the disease.

The second diffusion characteristic is the non-triable nature of genetic testing. When a technology is triable -- can be experimented with on a limited basis -- the risk of uncertainty accompanying the new technology is reduced. Genetic testing is non-triable because for most people genetic testing is a one-time event. An individual is likely to undergo testing for a disease that is prevalent in his family.

Preventive and non-triable technologies have reduced adoption rate and tend to exacerbate privacy threats. First, due to the slow diffusion rate, users of these technologies are early adopters. Research shows that early adopters are more affected by value threats, such as privacy threats, than later adopters. Second, a privacy threat particularly deters individuals from adopting a technology where they are already resistant in the first place due the technology's non-triable and preventive nature.

So it appears that the preventive and non-triable nature of genetic testing made it vulnerable to the paradox. I suggest that regulators of new technologies should look out for other technologies that share these characteristics because they may also fall prey to the same paradox.