Protecting privacy and family life in the era of recreational genetics and big data

Abstract

Abstract: Since the complete sequencing of the human genome was achieved, genetic information has become a valuable asset. Big databases are built to collect and analyze human genetic information. Some of these biobanks collect genetic information through online websites, offering direct-to-consumer genetic testing. People receive advertisements and propaganda encouraging them to submit their biological samples and to have a complete copy of their genetic information. A variety of reasons can lead a person to submit this information to a big database. In some cases, this kind of genetic testing is done only for recreational purposes and without meeting proper standards concerning the protection of privacy. Bad use of this information can lead to various forms of genetic discrimination. Genetic information involves not just an individual, but also those who share his or her genes. Its use may affect not only the person whose genome has been collected, but also the related family. My goal in this paper is to address the problems created by recreational genomics.