Preventive, Non-Triable and Centralized Technologies: Policy Implications
Genetic Discrimination is rare, yet fear of discrimination inhibits the diffusion of genetic testing. Is there a way to resolve this paradox? Could we prevent other technologies from being caught in this problematic situation, where individuals are afraid of a minor or non-existent privacy threat and, therefore, refrain from using an important new technology?
Privacy regulations can be grouped into three categories according to their effect on individuals' risk perception: 1) a decisive and express restriction on uses of a technology that threatens privacy; 2) a hesitant stance usually comprised of partial and inconsistent restrictions on uses that threaten privacy; and 3) a decisive and express pronouncement not to restrict uses of the technology in order to protect privacy. The current approach to genetic discrimination falls into the second category. Legal protection against genetic discrimination is partial and inconsistent. This approach fails to alleviate privacy concerns.
As explained, Genetic testing was vulnerable to the paradox because of two diffusion characteristics. First, genetic testing is a preventive technology - it aims at helping prevent unwanted future events. Second, it is non-triable. Genetic testing cannot be experimented with - the testing is usually a one-time event.
I suggest that where a technology is preventive and non-triable, regulators should select the first approach, implementing a decisive and express restriction on uses that threaten privacy. This approach would be more effective in influencing risk perception and encouraging individuals to use the technology. Specifically, in the case of genetic discrimination, there has been a lot of talk about the need for a comprehensive federal genetic discrimination statute. I believe this statute is definitely needed. However, it is not needed to prevent genetic discrimination. It is necessary to influence individuals' risk perception and encourage them to test.
The third relevant diffusion characteristic is the centralized nature of the technology. Genetic testing is centrally diffused by the medical profession, particularly by genetic counselors. Currently, genetic counselors play a major role in spreading fears of genetic discrimination. Where a technology is centrally diffused intervention measures would be most effective when targeted at the group that diffuses the technology. In this case, education measures on the actual scope of genetic discrimination and on the type of legal protection measures available are likely to be more effective if targeted at genetic counselors instead of the general public.
Privacy regulations can be grouped into three categories according to their effect on individuals' risk perception: 1) a decisive and express restriction on uses of a technology that threatens privacy; 2) a hesitant stance usually comprised of partial and inconsistent restrictions on uses that threaten privacy; and 3) a decisive and express pronouncement not to restrict uses of the technology in order to protect privacy. The current approach to genetic discrimination falls into the second category. Legal protection against genetic discrimination is partial and inconsistent. This approach fails to alleviate privacy concerns.
As explained, Genetic testing was vulnerable to the paradox because of two diffusion characteristics. First, genetic testing is a preventive technology - it aims at helping prevent unwanted future events. Second, it is non-triable. Genetic testing cannot be experimented with - the testing is usually a one-time event.
I suggest that where a technology is preventive and non-triable, regulators should select the first approach, implementing a decisive and express restriction on uses that threaten privacy. This approach would be more effective in influencing risk perception and encouraging individuals to use the technology. Specifically, in the case of genetic discrimination, there has been a lot of talk about the need for a comprehensive federal genetic discrimination statute. I believe this statute is definitely needed. However, it is not needed to prevent genetic discrimination. It is necessary to influence individuals' risk perception and encourage them to test.
The third relevant diffusion characteristic is the centralized nature of the technology. Genetic testing is centrally diffused by the medical profession, particularly by genetic counselors. Currently, genetic counselors play a major role in spreading fears of genetic discrimination. Where a technology is centrally diffused intervention measures would be most effective when targeted at the group that diffuses the technology. In this case, education measures on the actual scope of genetic discrimination and on the type of legal protection measures available are likely to be more effective if targeted at genetic counselors instead of the general public.
posted by Gaia Bernstein at 5:35 AM
2 Comments:
This strikes me as very plausible, and I think your focus on the "higher-order" need for the statute really needs to get on legislators' radar. The sad thing is that many of them would use the fact that not much discrimination is happening now as an excuse not to pass a statute. When in fact the lack of discrimination may just reflect a lack of data, due to individual fear of being discriminated against.
As for the counselors--one interesting question is whether they bring up all possible negative consequences, even very unlikely ones, just in order to avoid liability. If so, perhaps relaxation of liability for incomplete advice might be in order.
I have to say, though, even a statute might not be enough to reassure the truly risk-averse...congresses and presidents can change. Perhaps courts would need to construe a constitutional-level property interest in non-discrimination in order to really assure people that the statute won't change in the future. Of course, that's very unlikely! But a finding like that, plus a case like Monsanto (finding a government taking of trade secrets), might at least impose a cost on policy change in the future in an anti-privacy direction.
One last thing--are there any industry people who are trying to prevent people from using such tests to, say, identify and buy the most comprehensive insurance?
One thing I do not explore in the paper is why is it that genetic discrimination not taking place? Perhaps it would occur sometime into the future. I am suggesting that a federal statute is needed right now to alleviate fears and increase use of the technology. It may be that one day this statute would be an effective tool in combating discrimination.
And you are right Frank, there is no guarantee that such a statute would be completely effective, but I think it would definitely be a step in the right direction.
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