Policy and regulatory implications of the new frontier of forensic genomics: direct-to-consumer genetic data and genealogy records

Scudder, Nathan; McNevin, Dennis; Kelty, Sally F.; Funk, Christine; Walsh, Simon J.; Robertson, James

doi:10.1080/10345329.2018.1560588

Cited by 22 publications

(10 citation statements)

References 33 publications

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“…At this writing, both GEDmatch and FamilyTreeDNA have been searched in this way. Long-range familial search raises a range of privacy concerns (Court, 2018; Ram et al, 2018; Kennett, 2019; Scudder et al, 2019). One response from advocates of long-range search has been to note that “raw genetic data are not disclosed to law enforcement...Search results display only the length and chromosomal location of shared DNA blocks” (Greytak et al, 2018).…”

Section: Discussionmentioning

confidence: 99%

“…These entities generally offer some subset of their services at no charge to uploaders, which helps to grow their databases. Upload services have also been used by law enforcement, with the goal of identifying relatives of the source of a crime-scene sample (Erlich et al, 2018; Edge and Coop, 2019), prompting discussion about genetic privacy (Court, 2018; Ram et al, 2018; Kennett, 2019; Scudder et al, 2019).…”

Section: Introductionmentioning

confidence: 99%

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Attacks on genetic privacy via uploads to genealogical databases

Edge

Coop

2019

Preprint

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7Direct-to-consumer (DTC) genetics services are increasingly popular for genetic genealogy, with 8 tens of millions of customers as of 2019. Several DTC genealogy services allow users to upload 9 their own genetic datasets in order to search for genetic relatives. A user and a target person in 10 the database are identified as genetic relatives if the user's uploaded genome shares one or more 11 sufficiently long segments in common with that of the target person-that is, if the two genomes 12 share one or more long regions identical by state (IBS). IBS matches reveal some information 13 about the genotypes of the target person, particularly if the chromosomal locations of IBS matches 14 are shared with the uploader. Here, we describe several methods by which an adversary who 15 wants to learn the genotypes of people in the database can do so by uploading multiple datasets. 16Depending on the methods used for IBS matching and the information about IBS segments 17 returned to the user, substantial information about users' genotypes can be revealed with a few 18 hundred uploaded datasets. For example, using a method we call IBS tiling, we estimate that an 19 adversary who uploads approximately 900 publicly available genomes could recover at least one 20 allele at SNP sites across up to 82% of the genome of a median person of European ancestries. 21In databases that detect IBS segments using unphased genotypes, approximately 100 uploads of 22 falsified datasets can reveal enough genetic information to allow accurate genome-wide imputation 23 of every person in the database. We provide simple-to-implement suggestions that will prevent the 24 exploits we describe and discuss our results in light of recent trends in genetic privacy, including 25 the recent use of uploads to DTC genetic genealogy services by law enforcement. 26(Regalado, 2019). One of the major applications of DTC genetics has been genetic genealogy. 31Customers of companies such as 23andMe and Ancestry, once they are genotyped, can view a list 32 of other customers who are likely to be genetic relatives. These putative relatives' full names are 33 often given, and sometimes contact details are given as well. Such genealogical matching services 34 are of interest to people who want to find distant genetic relatives to extend their family tree, and 35 can be particularly useful to people who otherwise may not have information about their genetic 36 relatives, such as adoptees or the biological children of sperm donors. Several genetic genealogy 37 services-including GEDmatch, MyHeritage, FamilyTreeDNA, and LivingDNA (Table 1)-allow 38 users to upload their own genetic data if they have been genotyped by another company. These 39 entities generally offer some subset of their services at no charge to uploaders, which helps to 40 grow their databases. Upload services have also been used by law enforcement, with the goal of 41 identifying relatives of the source of a crime-scene sample (Erlich et al., 2018; Edge and Coop, 42 2019), prompting discussion abo...

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Attacks on genetic privacy via uploads to genealogical databases

Edge

Coop

2019

Preprint

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“…When an individual gives informed consent to the use of her profile for law enforcement access, this individual decision might not only entail consequences for herself but also for her close and distant relatives . 18 Thus, someone who has never taken a DNA test could become part of a criminal investigation, just because a distant relative happened to have her DNA tested and consented to police access. 20 Even if the police does not have any genetic information about the people that have been identified as part of the suspect’s family tree (like their risks for diseases), an individual might still be part of the chain that leads to the suspect.…”

Section: Informed Consentmentioning

confidence: 99%

Commercial DNA tests and police investigations: a broad bioethical perspective

2021

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Over 30 million people worldwide have taken a commercial at-home DNA test, because they were interested in their genetic ancestry, disease predisposition or inherited traits. Yet, these consumer DNA data are also increasingly used for a very different purpose: to identify suspects in criminal investigations. By matching a suspect’s DNA with DNA from a suspect’s distant relatives who have taken a commercial at-home DNA test, law enforcement can zero in on a perpetrator. Such forensic use of consumer DNA data has been performed in over 200 criminal investigations. However, this practice of so-called investigative genetic genealogy (IGG) raises ethical concerns. In this paper, we aim to broaden the bioethical analysis on IGG by showing the limitations of an individual-based model. We discuss two concerns central in the debate: privacy and informed consent. However, we argue that IGG raises pressing ethical concerns that extend beyond these individual-focused issues. The very nature of the genetic information entails that relatives may also be affected by the individual customer’s choices. In this respect, we explore to what extent the ethical approach in the biomedical genetic context on consent and consequences for relatives can be helpful for the debate on IGG. We argue that an individual-based model has significant limitations in an IGG context. The ethical debate is further complicated by the international, transgenerational and commercial nature of IGG. We conclude that IGG should not only be approached as an individual but also—and perhaps primarily—as a collective issue.

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“…Genetic data from distant relatives in public genetic genealogy databases have aided dozens of other cold case investigations since then [ 29 ] and increased discussions around genetic privacy (e.g., Refs. [ [30] , [31] , [32] , [33] , [34] , [35] ]).…”

Section: Investigative Genetic Genealogymentioning

confidence: 99%