Ethical and social aspects of genetic testing

(2004)

A technology Assessment Contribution to the EURGENTEST Network of Excellence

The project “Ethical and Social Aspects of Genetic Testing Services: Issues and Possible Actions” aims at providing expert-based knowledge on existing or new ethical and social implications of genetic testing services, in order to support decision-making processes at the research, clinical and policy levels. It is integrated within the Ethical and Legal Unit of the EUROGENTEST Network of Excellence (part of the priority “Science and Society” of the 6th EU Framework Programme), a joint initiative for developing high-quality genetic testing services throughout Europe.
The project has been placed with the Flemish Institute for Science and Technology Assessment (viWTA), which advises the Flemish Parliament on scientific and technology developments and society-related issues. As part of a large network of public and private organisations giving policy advice on implications of scientific and technological developments, viWTA can rely on a wide and interdisciplinary expertise. Consequently, it is in a position to provide the EUROGENTEST partners with valuable and comprehensive data on ethical and societal implications of genetic testing services, and with prospective insight into actions to be taken in this domain.
According to its mission and working processes, viWTA wanted the project to follow an interactive process, in which experts would provide input on the past and ongoing debate on ethical and social aspects of genetic testing services. Experts were also called upon in order to draw up recommendations for further action in the field. The project design is further explained in Chapter 2, but comprises basically four major phases:
In a first defining phase, TA specialists and key-players from the EUROGENTEST Network of Excellence were invited to take part in a “framing workshop”. The aim of this workshop was to define the scope of the project, to specify the type of projects under investigation, to identify the ethical and social aspects to be investigated and to suggest further experts to be involved in the process.
In a second phase, viWTA selected a sample of 18 projects to be reviewed, which all addressed ethical and social implications of genetic testing services. A questionnaire sent to the 18 concerned project managers provided valuable information for understanding the issues at stake and the stakeholders involved (see Chapter 3).
Third, based on the answers received through the questionnaires, a first overview on the ethical and social implications addressed by these projects and the stakeholders’ views was drafted. It offered a basis for discussion at a workshop of international experts co-organised and hosted by the Institute for Prospective and Technological Studies (IPTS), which took place in Seville on 26-27 May 2005. Geneticists, ethicists, social scientists, Technology Assessment and Health Technology Assessment specialists, industry representatives and patients’ representatives were invited to complement and discuss the overview, and to make recommendations for further activities to be undertaken related to the ethical and social aspects of genetic testing services.
Finally, all the inputs gathered through the questionnaires and through the expert workshop in Seville were compiled in the present report, which was previously submitted electronically to all participants of the project (project managers who completed questionnaires, participants of both the framing workshop and the Seville workshop).