The Chills and Thrills of Whole Genome Sequencing
This is an incremental discussion of privacy problems for individuals and society in genomics, without proposing new solutions.
The paper addresses privacy and ethical issues raised by Whole Genome Sequencing (WGS) as it becomes more affordable and widely used in healthcare, identifying key research challenges without presenting specific results or numbers.
In recent years, Whole Genome Sequencing (WGS) evolved from a futuristic-sounding research project to an increasingly affordable technology for determining complete genome sequences of complex organisms, including humans. This prompts a wide range of revolutionary applications, as WGS promises to improve modern healthcare and provide a better understanding of the human genome -- in particular, its relation to diseases and response to treatments. However, this progress raises worrisome privacy and ethical issues, since, besides uniquely identifying its owner, the genome contains a treasure trove of highly personal and sensitive information. In this article, after summarizing recent advances in genomics, we discuss some important privacy issues associated with human genomic information and identify a number of particularly relevant research challenges.