Today, the UK's Human Genetics Commission (HGC) published the mother of all consultation papers. At 56 pages long, it is certainly no bedtime read. It will require quite a commitment of time and intellectual effort on the part of the respondent to read the consultation and answer the questions its asks.But the questions the new consultation, 'Whose hands on your genes?', asks are of great importance. Is there anything special about genetic information? Should consent to a test be specific or general? How should genetic information be stored and who should have access to it? These are questions that many members of the public are interested in.
But will these people respond to the consultation? One major problem with public consultations on matters scientific is comprehension. How do you do justice to the issues and explain the background to them effectively, whilst keeping the questionnaires easy enough to be read by anybody? The HGC has confronted this issue by publishing two consultation papers: an in-depth analysis of the legal, social and ethical implications of the collection and storage of genetic information and a shorter, less complicated questionnaire on the most important issues.
But there is still a concern about how many members of public will take the trouble to respond. As a person who lives and works in London, I (like every other Londoner) have strong views about public transport. But I doubt whether I'd take the time to look up a website, download a 56-page questionnaire, fill it in and send it off to the relevant authority. And transport, unlike genetics, is an issue that affects daily a large proportion of the population.
Of course, bodies like the Human Genetics Commission need to encourage the public to respond. But it shouldn't beat itself up if only a few hundred members of the public reply. Sometimes, a few clear voices can illuminate the debate just as well. One such lay voice is that of Benjamin Angel, a sufferer of cystic fibrosis who shared his concerns about genetic research with the Independent on Sunday (see Recommends). 'While the politicians and the churches are causing problems and research is not going ahead as it should, lives are being lost'.
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