Consensus Conference on Gene Therapy

Conclusions of the Lay Panel at the Consensus Conference on Gene Therapy held on September 22, 1995.

Introduction

1990 saw the worlds first tests of gene therapy on humans. In 1995 more than 100 tests will be conducted. The area is going through an explosive development. Expectations to gene therapy are enormous, because our knowledge of the importance of genes to diseases is growing rapidly. Not just the importance of genes to “classic” hereditary diseases, but also to widespread diseases such as cancer and cardio-vascular diseases.

In short, gene therapy is a technology that uses genetic material for disease treatment by transplanting DNA to the genes of a living person. Research is carried out on a range of methods to implant genes with the desired characteristics into body cells. Some of the methods are described in this report.

But are such methods free of risks? And can the alterations be inherited by future generations? And what about the financial aspects: will it be expensive or inexpensive, and how should we prioritise?

In the ethical area, too, there are a number of problems. How will our perception of ourselves and of diseases be influenced as still more “adjustments” and repairs are made to the body?

To throw light on these perspectives and questions, the Board of Technology organised a consensus conference on gene therapy in the days 22 – 25 September 1995 at the Copenhagen theatre, “Det Ny Teater”.

The objective of the conference was to obtain the evaluation of laymen of the perspectives of gene therapy, including whether the treatment should be allowed in Denmark.

Thus, the conference and group of laymen have contributed to the ongoing public debate and the upcoming decisions on gene therapy in the Danish Parliament and in the research environments.

This report contains the final document of the conference, prepared by the laymen on the interview panel. In addition, the report contains expert papers from the conference.

On behalf of the Board of Technology and myself I should like to thank everybody who contributed to the event. A special thanks to the two panels whose efforts have made this conference possible.

The Secretariat to the Board of Technology

October 1995

Ragnar Heldt Nielsen

Project Manager.