The Post-Genomic Era – How does increasing complexity change the debate on genetics?

Genomics comes up with complex and sometimes contradictory insights. Not only scientists but also doctors, teachers or journalists have to cope with ever-new concepts of what a gene is.

Defining a gene, or how genes are regulated, meaning the relation between genotype and phenotype, turned out to be more complex than expected. The complexity of the debate startled even experts, needless to say that it confused everyone else. If and how the new insights in the field of genomics are perceived outside the science-community, and what strategies are used to master understanding of them, was the central question of the project POCO (The Post-Genomic Era: How does increasing complexity change the debate on genetics?).

Seven explorative investigations dealt with

  • paradigm change in genomics,
  • genome Research in Science and Technology Studies and Gender Studies,
  • the doctor-patient relationship,
  • whether and how the complexity was perceived by stakeholders,
  • the public perceptions of complex technology,
  • genetic privacy and
  • policy advice.

ITA coordinated the project and contributed the parts on the science base, genetic privacy and policy advice.

The results  

showed that in some instances the issue did not seem to have registered at all; for example, insights from genomics did not seem to have any influence on the doctor-patient relationship. In many areas outside of a medical context, even conventional genetics appeared to be too complex to warrant dealing with it.

Also, while natural sciences accept multiple definitions of a gene, large parts of the public and the social sciences cling to the understanding of a gene being a piece of DNA, uniquely defining a property of the organism. Announcements of new discoveries of “genes for” this and that are supporting this misperception. In fact, what a gene really is, is of little relevance for non-experts. What counts are the benefits, risks and moral implications of research results, especially for those groups of people who are to some extent confronted with these results in their daily lives.

When it comes to communicating the latest research results, a more realistic rhetoric could eliminate many misconceptions. Take for example the issue of data privacy: Many still think that gene sequences convey information about particular persons. But it’s just not that simple. It seems that a more grounded communication strategy, which not only emphasises the potentials of new technology but also the limits to explanatory power, is needed.

Duration

11/2003 - 11/2006

Team

  • Helge Torgersen
  • Walter Peissl