Genetic data: Old and new challenges in data protection

Research output: Contribution to Book/Report typesChapterpeer-review

Abstract (may include machine translation)

The recent acceleration of discovering and identifying genetic data has not only excited scientists but also posed serious legal challenges. It is partially because the human DNA has an important symbolic significance. It is not regarded as a mere health-related data but it represents a form of identity and health status. The threat of developing symptoms affects the individual's life, especially in case of late-onset diseases. Furthermore, genetic anomalies may be inherited by the offspring, affecting the afflicted individual's carrier and his or her spouse's chances of having a healthy child. However, special legal treatment of genetic data goes beyond the conceptual problems. The major concerns are based on the various uses of genetic data, and its potential effects on family members. Since genetic information may tell a lot about the biological origin of the individual, including even paternity information, exclusive access rights are often challenged. Though much attention has been paid to the protection of genotype-data, traditional forms of genetic data, such as the observation of the phenotype or family medical history, still seem to be outside the legal focus. The author describes various uses and applications of genetic data and summarizes the old and new challenges in the protection of genetic data.
Original languageEnglish
Title of host publicationEthics in Human Genetics
Subtitle of host publicationChallenges of the (Post) Genomic Era
EditorsJozef Glasa
PublisherCharis Ltd.
Pages89-99
Number of pages9
ISBN (Print)80-88743-51-6
StatePublished - 2002

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