Maria Hedlund studied the political decision-making process regarding the modification of human genes from the early 1980s through 2006, when a law regulating certain uses of medical genetic technology took force.
Medical genetic technology brings to the fore the problem of the role of experts in society and how democratic decisions should be made concerning issues that require expert knowledge. It is obvious that experts must make purely medical decisions, according to Maria Hedlund, but when it comes to decisions about technologies that touch on existential questions, citizens must have both insight and control.
“In medically complex issues, the experts set the agenda. The technical perspective obscures other issues,” says Maria Hedlund.
As an example, she mentions that when experts talk about solutions to the problems of involuntary childlessness, the focus is on technical solutions like in vitro fertilization. Other alternatives, like adoption, are not brought up.
Maria Hedlund has seen how medical experts have largely been allowed to determine how the issue is treated in politics. As new medical technologies are developed, regulatory documents are revised to meet the wishes of the experts.
“One example of this is the modification of genes in a way that can be inherited by coming generations,” says Maria Hedlund. “Concerns about unpredictable risks in the long run led to the prohibition of the method before it became a reality. When medical researchers began to see potential uses for the method, however, the ban was lifted. Legislators left it to the medical experts to decide on their own when the method was ethically acceptable.”
Because experts formulate the problems and determine the political agenda, issues risk being more about what experts judge to be technically feasible than what should be permissible in a democratic society, according to Maria Hedlund.
Maria Hedlund publicly defended her thesis Democratic Shortcuts: Expert Influence in the Swedish Legislative Process Regarding Medical Genetic Technology on November 23, 2007. The dissertation can be downloaded from: