title: Challenges of web-based personal genomic data sharing.
abstract: In order to study the relationship between genes and diseases, the increasing availability and sharing of phenotypic and genotypic data have been promoted as an imperative within the scientific community. In parallel with data sharing practices by clinicians and researchers, recent initiatives have been observed in which individuals are sharing personal genomic data. The involvement of individuals in such initiatives is facilitated by the increased accessibility of personal genomic data, offered by private test providers along with availability of online networks. Personal webpages and on-line data sharing platforms such as Consent to Research (Portable Legal Consent), Free the Data, and Genomes Unzipped are being utilized to host and share genotypes, electronic health records and family history uploaded by individuals. Although personal genomic data sharing initiatives vary in nature, the emphasis on the individuals' control on their data in order to benefit research and ultimately health care has seen as a key theme across these initiatives. In line with the growing practice of personal genomic data sharing, this paper aims to shed light on the potential challenges surrounding these initiatives. As in the course of these initiatives individuals are solicited to individually balance the risks and benefits of sharing their genomic data, their awareness of the implications of personal genomic data sharing for themselves and their family members is a necessity. Furthermore, given the sensitivity of genomic data and the controversies around their complete de-identifiability, potential privacy risks and harms originating from unintended uses of data have to be taken into consideration.
authors.affiliation: Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, University of Leuven, Kapucijnenvoer 35, Box 7001, 3000, Leuven, Belgium, mahsa.shabani@med.kuleuven.be.
authors.forename: Mahsa
authors.initials: M
authors.lastname: Shabani
authors.forename: Pascal
authors.initials: P
authors.lastname: Borry
mesh_terms: D001291:Attitude of Health Personnel; D001530:Belgium; D016494:Computer Security / Q000941:ethics / Q000331:legislation & jurisprudence*; D057286:Electronic Health Records / Q000941:ethics / Q000331:legislation & jurisprudence*; D030661:Genetic Privacy / Q000331:legislation & jurisprudence*; D023281:Genomics; D006801:Humans; D033181:Information Dissemination / Q000941:ethics* / Q000331:legislation & jurisprudence; D020407:Internet; D012941:Social Responsibility