Wednesday, December 13, 2006

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.


Blogger Lyria Bennett Moses said...

Practically, what does it add to look at diffusion characteristics?

Let us assume that ordinary observation is sufficient to observe that many people choose to avoid genetic testing (ie that the diffusion rate is not matched to the group who might benefit). Such observations are often made in the medical/genetic literature and most genetic counsellors are probably aware of such statistics. We also know that there is concern about privacy that outstrips the real world problem. The paradox is already evident at this step.

Presumably, you go to the next step, not to add anything to the genetic testing debate, but rather to help spot similar problems in other technologies. But, suppose I said to you "name another technology where the same problem arises, ie preventative, non-triable, inaccurately perceived risk" would the generalised scheme help?

12/13/2006 7:55 PM  
Blogger Frank said...

I think the emphasis on preventative character is very important, and may tie in to a burgeoning literature on mis-estimation of risks. This TIME article has a nice collection of examples:

As the article shows, people will sometimes shy away from a complex technology (flying) in favor of a less complex one (autos) out of an incomplete understanding of the risk of the latter.

Perhaps that would be another axis of comparison--what are the alternatives.

One final idea--is there any truth to Dan Solove's idea of the "virtue of knowing less" in a context like this? That is, if a person may feel utterly depressed if they know the will get a debilitating disease at 40, might it be rational for them simply not to know? I don't know if this is relevant to your theory, but I do think it might lead us to another take on the "triability" prong of the inquiry.

12/13/2006 8:24 PM  
Blogger Gaia Bernstein said...

Lyria, technologies that are likely to share the same characteristics of preventability and non-triability are other medical testing technologies. HIV testing would be a good example because of the stigma accompanying a positive result. I have not engaged in an empirical survey of HIV testing but my general impression is that fear of discrimination greatly outweighs the actual discrimination taking place.

I agree with Frank that people may rationally choose not to test because they feel that they can't cope with knowing. In particular in the case of untreatable diseases. Surveys actually show that after genetic discrimination not wanting to know is a leading reason people cite for not testing. This is indeed another way in which genetic testing is a non-triable technology.

12/14/2006 9:55 AM  
Blogger Lyria Bennett Moses said...

HIV testing doesn't really move up a layer of generality. In other words, it is possible to draw parallels between stigma associated with genetic testing and HIV testing without moving up to the generality of diffusion characteristics. Is there an example of greater generalisation leading to a link that hadn't previously been made? Something like Frank's flying example (although I don't know enough about aviation history to comment here, it is probably not analogous).

12/14/2006 4:41 PM  
Blogger Leviana said...

Genetic Discrimination ? a prestigious Canada No Prescription pharmacy makes an study about that so watch out.

10/29/2009 12:50 PM  

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