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.Electronic supplementary materialThe online version of this article (doi:10.1186/s40504-014-0022-7) contains supplementary material, which is available to authorized users.

Dynamic Consent: a potential solution to some of the challenges of modern biomedical research

“…Researchers must ensure that this empowering feature of the platform does not lead to undesirable side effects [59]. Research participants should not have to take responsibility for making decisions regarding complex issues that they do not fully grasp or are not in a position to assess properly [59, 72]. For instance, as data sharing spans several years and a variety of projects, research participants may struggle to decide which data sharing scenarios are or are not acceptable to them.…”

Keeping data alive: talking DTC genetic testing

“…Yet, with limited understanding of the ramifications and futures of genetic information, it is impossible to fully comprehend what this means in the long run. Social media and information technology professionals might communicate light-heartedly about their newly found genetic cousins without realizing that they have given away control and oversight of information that is not only personal, but extends to other people (Shabani & Borry, 2015). As O'Riordan (2011, p. 307) …”

Providing Access to Genomic Variant Knowledge in a Healthcare Setting: A Vision for the ClinGen Electronic Health Records Workgroup

“…Current work with GenomeConnect has the potential to provide patients with access to information. However, success with such a model comes with several challenges, given the sensitivity of genomic data and the controversies around (de‐)identifiability, potential privacy risks, and harms originating from unintended uses of data …”