It is strange how much people trust the DNA to tell them the truth. As one participant at a recent conference said, it is our Book of Life today. People trust DNA evidence to solve all crimes and DNA tests to solve all diseases. But we don't trust the people managing it.
This week's CNEhealth.org Blog was about DNA registers and biobanks. Some want to expand them, some think it would hurt civil liberties. Most interestingly, Swedes are really negative to it all in surveys while quite positive in practical action.
My explanation for this paradox is that Swedish people in general trust their police and researchers - we have not had that many scandals undermining confidence in them as institutions. But they don't trust the oversight system of politicians, science councils and ethical committees. These are seen as largely opaque groups with little accountability and quite possibly with ethical agendas divergent from the public's. So people want to keep an eye on them, not the researchers or police.
Of course, in official Sweden the views are reverse: politicians and science administrators love the ethical councils and their presumably objective and good evaluations of everything and everyone. Individual scientists and policemen cannot be trusted, and the public has no idea about what goes on in science, ethics or politics. That scientists sometimes "shop" between committees to get one that will approve an experiment or that they ideally should represent the ethical views of people rather than a certain elite, that is lost on them.
There is also the usual difference between statements - here general principles and what is seen as socially agreed on (in this case a greenish suspicion of biotech) - and action, where practical issues become more significant (it is a bother protesting against the use of DNA samples, and besides there is no real cost of allowing experiments or storage). The status quo bias is strong. Voters only react when they think the government or its appointed organisations are too self-serving or acting against the voters' interests. Hence there is little need to worry about the DNA registers and their management, but much more to worry about their oversight.
Ti build trust one need openness, accountability and some shared moral assumptions or at least the acknowledgment of legitimacy. But setting up ethical institutions has far too often become a way for decisionmakers to avoid responsibility themselves (compare this with the recent fad for ethical consultants among many companies). Each new layer just decreases the transparency and diffuses the accountability (if a truly nasty experiment gets done, do we blame the researchers or the ethical council that approved it or the politicians who put them there?), and given how little interest there is among politicians to stand up for any form of coherent ethical discussion there is good reason to believe that the ethics or legitimacy is not felt that strongly.
What to do? Perhaps the key point is to avoid moving responsibility too high up. Let researchers do their experiments, but insist on transparency and accountability. Ethical councils could gain much by acting as an interface between researchers and the public (not the NGOs usually calling themselves the public). In many cases abuses are better handled through other methods: fraudulent net/postal DNA tests are mail fraud, misuse of DNA records by the police a matter for Internal Affairs.
Posted by Anders at October 28, 2004 11:44 PM