Home // ALLDATA 2016, The Second International Conference on Big Data, Small Data, Linked Data and Open Data // View article
Authors:
Donna M. Gitter
Keywords: bioinformatics, genetics, computational biology, informed consent, privacy
Abstract:
This article analyzes issues of informed consent and patient autonomy raised by advances in bioinformatics and computational genomics. The article describes the increasing use in biomedical research of estimated data. Researchers are able to use genetic and genealogical data from research subjects, who did agree to participate in genetic testing, in order to make educated guesses about the genetic profiles of their relatives who did not volunteer to participate. This estimated data can then be combined with health records of the non-volunteers, in order to conduct computational genetic research, often termed “in silico” biology, without their informed consent. The article concludes that contributors of estimated data deserve the protection of both the law of informed consent and the right not to know their genetic risk factors. Neither research nor its results ought to be foisted upon any individual, least of all those who unwittingly participate.
Pages: 7 to 11
Copyright: Copyright (c) IARIA, 2016
Publication date: February 21, 2016
Published in: conference
ISSN: 2519-8386
ISBN: 978-1-61208-457-2
Location: Lisbon, Portugal
Dates: from February 21, 2016 to February 25, 2016