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The use of genetic information and public accountability

Board, Spectrum Medical Sciences, Ltd, based in Helsinki, Finland

With the explosion in new technologies that heralded the end of the 20th century, enabling the rapid gathering and analysis of genetic information from humans and the multitude of other organisms with which they interact on this planet, we are now in a position not only to understand the details of everyone's genetically determined features, but to manipulate them to our own design. The implications of the power of such knowledge are indeed profound, demanding that the developers and users of the technology spawned by this revolution apply it according to the terms of a new social contract to be negotiated with the public at large. The means by which industries and medical practitioners educate the public consumers, and the mechanisms by which the public, through the institutions of democratic government and other modes of communication, makes its concerns and desires a functional part of the equation, are being determined. To establish processes for both, with the flexibility to accommodate individual and collective values that are highly time-dependent, is a major challenge of the 21st century. Applications of genetic data are examined with respect to professional responsibility, the possibility of deliberate misuse, the principle of autonomy, and distributive justice.

Public Understanding of Science, Vol. 8, No. 3, 223-240 (1999)
DOI: 10.1088/0963-6625/8/3/307


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