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Valencia, 1990.

Valencia, 1990

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.

Neil Holzman noted that screening can reduce autonomy and called for an effort to align public expectations with the limits of genetics. Mark Rothstein examined the conflicting interests of individuals, employers, and society in pre-employment screening. G. W. de Wit argued that genetic information will be useful to insurers only in cases of single-gene diseases and, in such cases, "equality of information" between insurer and insured must be enforced, at least for life and disability insurance.

Helen Donis-Keller described the competitive arena of commercial genetics laboratories, which do not have uniform standards and may not produce high-quality results. Norman Fost discussed several contra-indications for instituting mass cystic fibrosis carrier screening.

Daniel Kevles suggested eugenics may continue to mislead, not for lack of good intentions, but simply because conclusions are scientifically wrong. Benno Muller-Hill argued for the sole right of the individual to know one's genotype. William Bartholome called for the establishment of mechanisms to control the application of new genetic knowledge.

At the final session, the Valencia Declaration turned out to be a noncontroversial endorsement of international collaboration, an acknowledgment of the need for public education and debate to assure that genetics programs conform with the ethical principles of respect for persons, beneficence, and justice, and a restatement that confidentiality of genetic information must be maintained. Queen Sofia received the Declaration without comment.--Michael S. Yesley, Los Alamos National Laboratory. The views presented are those of the author.
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Title Annotation:discussion of human genome project ethics in Spain
Author:Yesley, Michael S.
Publication:The Hastings Center Report
Date:Mar 1, 1991
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