As medical researchers march into genetics laboratories, it is essential that members of the community march alongside them, the past president of the Canadian Bioethics Society says. “Clinical trials are going to be in big trouble if there isn't more honesty and more transparency in transmitting the legitimate goals of DNA research,” Dr. Bartha Maria Knoppers told participants attending a recent meeting in Halifax.
In an earlier paper written for the McGill Law Journal, Knoppers explained why DNA research is raising concerns in the community that other types of research do not. “These developments have raised a certain sense of public unease with the deciphering of the genomes of all living organisms … and a perceived transgression of our humanness, if not humanity, in this new technocracy.”
Knoppers says a critical first step in overcoming this unease is to promote the active involvement of community members in the research. “We need a [bigger] public voice,” says Knoppers, a law professor at the Université de Montréal. “The first place to go is the research ethics review board. There is a real mandate here for patients' organizations to get involved.”
In 1978, the Medical Research Council of Canada (MRC) released its Ethics in Human Experimentation Guidelines, which called for the addition of lay members to ethics review committees. “[Lay members] are essential to ethics review committees and might form a majority,” the guidelines stated. Twenty years later, a policy statement released by the MRC, Natural Sciences and Engineering Research Council of Canada and Social Sciences and Humanities Research Council of Canada (www.nserc.ca/programs/ethics/english) called for “at least one member with no affiliation with the university be recruited from the community.”
Knoppers said that the hope that community members would comprise the majority of committee members has now transformed into the need for committees to have at least one community member.