The Postgenomic Condition: Ethics, Justice, & Knowledge after the Genome

by Jenny Reardon

Universities and companies alike increasingly use the techniques and media of the sales pitch to communicate with patients. Billboards imploring citizens to support genomics and biomedicine spot the highways. This form of communication differs markedly from HapMap community engagements and Generation Scotland focus groups. Instead of understanding what people want and believe and then attempting to create practices and policies that align with the will of the people, today’s precision medicine initiatives begin with the policy—share data—and then attempt to “put” ideas into citizens’ heads that will make them want to comply. There is little space for critical discussion. There is little if any space to ask who benefits. This time the answer is given: we all will if we give our DNA and data. This, we are asked to believe, is how a new social contract with biomedicine forms. Increasingly, this approach rings hollow and creates dis-ease. Some clearly benefit: the researchers and business people who enjoy the beautiful architecture, landscape, gyms, and massage facilities of the new UCSF Mission Bay campus on upper Third Street.