Friday, May 7, 2010

Presumed consent for research

Although presumed consent for organ donation
may not be a panacea, it does seem to help. (Showing that presumed consent is correlated with other determinants of high donation rates does not determine the direction of causality.) Why not do the same for certain kinds of research?

A case in point is the use DNA samples for research on the genetics of disease. In a recent case, the University of Arizona returned DNA samples to a Native American tribe, the Havasupai, and paid them $700,000, to settle a lawsuit about informed consent. The tribe members had donated DNA for what they thought was a study of diabetes, but the DNA was used for other purposes. (The dispute about what they were actually told was not settled. See the news article in Science, April 30, 2010, p. 558.)

The main issue here seems to me to be property rights. Some of my recent research has shown that people think of property rights as dictated by deontological (non-consequential) moral rules. But economic and utilitarian analyses of property argue that it exists because of its social value in terms of beneficial consequences, such as encouraging development of property, production, and innovation.

In the case of organs and DNA samples, it is hard to see how functions like these are relevant. The social value of not having property rights in these cases seems quite high, much higher than any benefit of property rights might be.

The idea of presumed consent does not completely remove property rights. It removes them unless they are positively asserted. This limitation allows people who want property rights an option to take them. In general, we might think of such desires as anti-social. However, some people might not trust others to look out for their welfare. They might believe that organ donors are allowed to die more quickly or that DNA donors will be found to have some condition that others can use against them. The option to assert property rights may help to make the users more trustworthy, lest they become more generally untrusted.

My hunch here is that perception of the violation of rights is highly dependent on social norms and conventions. For example, when we write in blogs we assume that our writing is in the public domain. It is polite to attribute quotations but not illegal not to do so, unlike other writing. I don't know the law on this, but this is what I assume, and I suspect that others do too. In another example, when I go to a tourist attraction I do not think I have the right to consent to being in someone's photograph of the scene. So long as we know what our rights are, these expectations are generally harmless.

More generally, in cases like these, people get upset when they think that social norms and conventions actually give them certain rights. If they did not think so, they would not get upset. This argument applies, of course, only to cases where there is little or no justification for providing a right in the first place, in terms of the social value of such provision.

1 comment:

  1. I'm not sure that people presume that the content of blogs is in the public domain. I don't, anyway.