Proposed social and technological solutions to issues of data privacy in personal genomics

TitleProposed social and technological solutions to issues of data privacy in personal genomics
Publication TypeConference Paper
Year of Publication2014
AuthorsGreenbaum, D, Harmanci, A, Gerstein, M
Conference NameEthics in Science, Technology and Engineering, 2014 IEEE International Symposium on
Date Published23-24 May 2014
Publication Languageeng
KeywordsBioinformatics , Clinical , continuing , Data , DATABASES , DNA , Functional , GENOMICS , licensing , Medical , personal , Personally , Privacy , Sequential , SOCIAL , Technological
AbstractThe issues of privacy and disclosure are two sides of a weighty coin. Computational biologists and other scientists involved in genomic research need to be constantly cognizant of the push and pull of these two important concepts. Clinical genomics research in particular raises a number of particularly poignant concerns as society struggles between invasions of privacy such as recent efforts by the FBI and the NSA, and our own (surprisingly) personal disclosures on social media sites or via apathetic acquiescence to large data collection efforts. With regard to privacy there are numerous computational efforts that have heretofore offered to provide both the robustness of protection and the ease of use to be effective in manipulating the terabytes of data before the genomics researcher. Unfortunately algorithms alone have thus far failed to provide either the necessary strength to foil those intent on obtaining information or the promised agility to manipulate the vast datasets. While technical solutions advance, they cannot stand on their own and this paper proposes and outlines a licensing scheme, similar to those used by professional organizations, that not only enforce a code of conduct and punish those who fail to live up to that code, but also mandate required continuing education to limit the possibility that the code will be violated inadvertently. It is the use of the social and the technological advances together that will likely create not only an environment that fosters research and innovation, but also one that is responsive to privacy needs and norms.