Article Text
Abstract
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.
- genetic information
- ethics
- confidentiality/privacy
- informed consent
Data availability statement
There are no data in this work.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
Statistics from Altmetric.com
Data availability statement
There are no data in this work.
Footnotes
Contributors NFdG is the main author of the article. All authors contributed to drafting the initial manuscript and commented on later versions of the manuscript. All authors approved the final manuscript and agree to be accountable for all aspects of the work.
Funding Dutch Research Council (Nederlandse Organisatie voor Wetenschappelijk Onderzoek), project number PGW.19.014.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
Linked Articles
Other content recommended for you
- Public participation in genetic databases: crossing the boundaries between biobanks and forensic DNA databases through the principle of solidarity
- Accessing medical biobanks to solve crimes: ethical considerations
- Forensic DNA databases: genetic testing as a societal choice
- Spanish public awareness regarding DNA profile databases in forensic genetics: what type of DNA profiles should be included?
- Biobanks for non-clinical purposes and the new law on forensic biobanks: does the Italian context protect the rights of minors?
- The retention of forensic DNA samples: a socio-ethical evaluation of current practices in the EU
- Sport and exercise genomics: the FIMS 2019 consensus statement update
- Direct-to-consumer genetic testing
- Disclosure ‘downunder’: misadventures in Australian genetic privacy law
- From proband to provider: is there an obligation to inform genetic relatives of actionable risks discovered through direct-to-consumer genetic testing?