Identifying Personal Genomes by Surname Inference

Abstract

Sharing sequencing data sets without identifiers has become a common practice in genomics. Here, we report that surnames can be recovered from personal genomes by profiling short tandem repeats on the Y chromosome (Y-STRs) and querying recreational genetic genealogy databases. We show that a combination of a surname with other types of metadata, such as age and state, can be used to triangulate the identity of the target. A key feature of this technique is that it entirely relies on free, publicly accessible Internet resources. We quantitatively analyze the probability of identification for U.S. males. We further demonstrate the feasibility of this technique by tracing back with high probability the identities of multiple participants in public sequencing projects.

Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study

“…Interestingly, there was little evidence of fear of results or implications for insurance, employment or privacy being a potential barrier to participation in genomics research: only one person stated that their reason for being unwilling to participate in genomics research was that they would be "scared to know," and only one person's reason for being unwilling appeared to be linked to concern about the potential for loss of privacy, saying "once information is out, it goes out all over." We speculate that this may perhaps be due to low awareness of the possible implications for insurance and employment (Dorsey et al 2012), low relevance of these issues given the low income of many of these patients, or low awareness of the current evidence indicating the inherent impossibility of guaranteeing privacy of personal genomic information once donated to genomics research (McEwen et al 2013;Gymrek et al 2013). Alternatively, it could reflect a genuine lack of fear or concern regarding these issues.…”

Naked bodies, naked genomes: the special (but not exceptional) nature of genomic information

“…The recent revelation that it is possible to identify individuals on the basis of their "deidentified" genomic data serves as a case in point. 26 There was widespread negative reaction and alarm despite the fact that no negative consequences befell those who were reidentified. 27 The bare fact that these individuals were reidentified ("unclothed, " so to speak) itself constituted the harm.…”

Research participants’ attitudes towards the confidentiality of genomic sequence information

“…Third, it has been demonstrated that failsafe de-identification of human genomic data is not possible. 7 A fourth point is that genomic sequencing methods have co-evolved with powerful tools for manipulating and sharing these data in large bio-repositories and databases. The relative ease of sharing data among investigators underscores a need to modernize guidelines for using these data in research now that it can be linked to the individuals who contributed it more readily.…”