Academic journal article The Hastings Center Report
An elaborate workshop intended "to stimulate international cooperation in the ethical aspects of the Human Genome Project" was held last November in Valencia, Spain. The generous hosts (Fundacion Banco Bilbao Vizcaya and Fundacion Valenciana de Estudio Avanzados) provided a panel of prominent speakers, an agreeable setting, superb comestibles, and no less than Her Majesty Queen Sofia to preside over the final session and receive the results of the workshop.
In three days the speakers covered an exhaustive list of topics, including national scientific and social policies on the HGP, religious considerations, the concept of self, the impact of the HGP on medicine and biology, the uses of genetic information, privacy and confidentiality, commercialization, and eugenics. Many of the formal presentations crossed these topical boundaries, and eugenics was implicated in nearly all the topics.
On a parallel, less visible track, several workshop participants labored over a "Valencia Declaration" that, in the words of keynoter Jack McConnell, "could serve as a guideline for all working in the field." This task proved rather daunting, and some participants questioned why it was attempted. The effort was probably occasioned by the genome scientist' impatience to demonstrate some progress toward resolving the issues discussed in the formal presentations.
Among the presenters, Eric Jeungst suggested genetic stigmatization and fatalism may be avoided by emphasizing individuals' own responsibility and the possibility of environmental changes to protect against genetic susceptibilities. Albert Jonsen predicted genetic information will reshape the traditional doctor-patient relationship, focusing more attention on family than individual, and creating a class of presymptomatically diagnosed "unpatients" for whom no therapy is currently available. …