Exploring the Key Informational, Ethical and Legal Concerns to the Development of Population Genomic Databases for Pharmacogenomic Research
The Informing Science Institute
Informing Science and Information Technology
The completion of a high quality comprehensive sequence of the human genome has lead to the discovery of genetic links to complex diseases and the development of target drugs. Population genetic databases (PGDs) are a powerful resource to the systematic study of the genetic component of disease; in the quest to understand the impact of genetic factors on drug response data from laboratory experiments, computational methods and clinical studies must be integrated. The establishment of a pharmacogenomics knowledge base entails complex information management balanced with the appropriate legal and ethical standards. This article reviews some of the ontology development challenges and examines the need to establish a legal structure which creates the proper intellectual property incentives to develop PGDs and the ethical standards that must be upheld so that the terms of informed consent are legitimate.
Published by The Informing Science Institute in Issues in Informing Science and Information Technology Volume 2, pages 395-403.
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