Listening to 'normal people'

A “citizens' conference” on stem cell research was launched over the weekend in Germany and will for the first time allow the voices of “normal people,” to be heard on the highly controversial issue, according to Christof Tannert, head of a project studying ethical questions in biomedicine.Tannert, head of Bioethics and Science Communication at the Max Delbrueck Center for Molecular Medicine in Berlin-Buch, told The Scientist that in the past, the German Parliament depended almost entirely on the opinions of experts when crafting new stem cell research laws. “We've heard from lots of so-called experts,” Tannert said. “But the experts are privileged with respect to information and education. What we want to bring into the process are normal people and their experiences in normal life. With respect to ethics, everyone is an expert.”The Citizens' Conference is based on a method called “consensus conference” that the Danish Parliament has used in the past to learn how the general public feels on important issues, Tannert said.It is an attempt to make “democracy function better,” said Tannert, a biochemist, theologian, and politician who served in the Berlin state Parliament and the European Parliament.He described the Citizens' Conference as the highlight of the 3-year project he is leading, called “Discourse on Ethical Questions of Biomedicine,” financed with a grant of around €1 million from the German Ministry of Education and Research. Research Center Juelich is also cooperating on the project, which also includes the Delphi Study, a detailed survey asking stem cell scientists what progress and medical benefits they expect from their research in the next decade.Tannert and his project team earlier this year sent out letters to 14,000 people selected at random in Berlin and the nearby cities of Bernau and Nauen, asking whether they would be interested in participating in the Citizens' Conference. Of the 500 positive responses, his team selected 20 adults—10 men and 10 women—to participate.The first of three scheduled conference weekends began Friday (December 12), during which two people decided to drop out, Tannert said. The remaining 18 citizens spent the 3-day weekend cloistered in Berlin to learn more about stem cell research and to discuss the issues in small and large groups, which were led by outside moderators from a German university.The 18 citizens will meet again for 3 days of private, internal discussions at the end of January before a closing conference from March 12–14.Tannert said the conference participants last weekend agreed for the time being to remain anonymous and to have no contact with the press. “They should not be influenced,” he said, but added that the citizens might decide to speak publicly at either of the next two conferences.The goal is for the citizens to write a report detailing their feelings about stem cell research, he said, adding that the report will be delivered in March to the German Bundestag, or lower house of Parliament. “The optimum result would be a consensus report,” Tannert said. “But the reality will more likely be a report that contains majority views and minority views.”Results of the Delphi Study of stem cell scientists will be passed on to the citizens to give them a clearer idea of potential medical benefits from stem cell research, Tannert said.The Delphi Study is being led by Peter M. Wiedemann, head of the Humans, Environment, Technology Program Group at the Research Centre Juelich. He told The Scientist that about 100 people in Germany were identified as intimately involved in stem cell research. Of those, 64 agreed during the summer to participate in the survey and 49 returned the questionnaires, which take from 2.5 to 4 hours to complete.Preliminary results were compiled, summarized, and sent to the 49 respondents in order to let them know how their colleagues answered, Wiedemann said. The 49 stem cell experts were then asked to fill out the questionnaire a second time, giving them a chance to revise their answers after reading the summary of the first questionnaire.For example, Wiedemann said, if someone said in the first survey round that he expects a medical benefit in 2 years, but everyone else says 10 to 15 years, he may decide to change his answer.Some 36 of the original 49 respondents answered the second questionnaire, and final results will be published in February, Wiedemann said.He declined to reveal any preliminary findings. But when asked whether any of the preliminary results had been unexpected, he said: “Yes, there have been some surprises.”

Listening to 'normal people'

German project asks real folks what they think about stem cell research

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