On Sharing Intentions, and Personal and Interdependent Privacy Considerations for Genetic Data: A Vignette Study

Abstract

Genetics and genetic data have been the subject of recent scholarly work, with significant attention paid towards understanding consent practices for the acquisition and usage of genetic data as well as genetic data security. Attitudes and perceptions concerning the trustworthiness of governmental institutions receiving test-taker data have been explored, with varied findings, but no robust models or deterministic relationships have been established that account for these differences. These results also do not explore in detail the perceptions regarding other types of organizations (e.g., private corporations). Further, considerations of privacy interdependence arising from blood relative relationships have been absent from the conversation regarding the sharing of genetic data. This paper reports the results from a factorial vignette survey study in which we investigate how variables of ethnicity, age, genetic markers, and association of data with the individual's name affect the likelihood of sharing data with different types of organizations. We also investigate elements of personal and interdependent privacy concerns. We document the significant role these factors have in the decision to share or not share genetic data. We support our findings with a series of regression analyses.

The Right to Data Portability: conception, status quo, and future directions

“…The RtDP also creates several technical privacy and security challenges such as interdependent privacy considerations that address data associated with multiple individuals, e.g. social connections [34,35,44]. Further, the RtDP, like the Right to Access, harbours considerable security vulnerability, as a lack of standards and poor request practices create room for impersonation by merely bypassing one authentication step, and thus gaining access to extensive and sensitive user data [8,18].…”

Beyond Data Markets: Opportunities and Challenges for Distributed Ledger Technology in Genomics

“…However, with the availability of relatively inexpensive means for acquiring and analyzing genome data on the one hand and the inherent characteristics of genome data (e.g., uniqueness, kinship, staticity) on the other hand [15], a variety of ethical, legal, and social challenges have emerged [16,17]. Such challenges include, for example, trade-offs between individuals' right to privacy and the overall benefit of freely sharing genome data [16], interdependent privacy due to kinship [18], individuals' ability to comprehend and interpret the results of genetic testing [19], or the handling of inadvertent findings [20].…”

A Survey on Interdependent Privacy

“…Concerns. Weidman et al perform a vignette survey study ( [Aviram 2012]) to explore the impact of key factors, such as demographic characteristics, on trust, personal and interdependent privacy, and on genetic data-sharing intentions [Weidman et al 2018]. Specifically, the authors design two vignettes: (i) They ask the respondent to answer questions regarding the sharing of their own genomic data, and (ii) they ask the respondent to answer questions assuming friends or siblings seek advice about sharing their genomic data.…”

“…Manuscript submitted to ACM collective privacy [Squicciarini et al 2009] [Ilia et al 2017;Jia and Xu 2016a,b;Ratikan and Shikida 2014;Squicciarini et al 2010Squicciarini et al , 2011] multi-party privacy [Thomas et al 2010] [Fogues et al 2015;Hu et al 2013;Li et al 2017a;Such and Criado 2014Such and Rovatsos 2016] networked privacy [Boyd 2012] [Cho and Filippova 2016;Marwick and Boyd 2014;Vitak et al 2015] interdependent privacy Chia 2013] [Ayday andHarkous and Aberer 2017;Olteanu et al 2018Olteanu et al , 2017Olteanu et al , 2019Pu and Grossklags 2014Symeonidis et al 2016a;Weidman et al 2018] peer privacy [Chen et al 2015] [Ozdemir et al 2017] group privacy [Bloustein 1978] [Radaelli et al 2018] multiple-subject privacy [Gnesi et al 2014] [ Olteanu et al 2018]…”