'Commercial DNA tests and police investigations: a broad bioethical perspective' by Nina F de Groot, Britta C van Beers and Gerben Meynen in (2021) 47(12) Journal of Medical Ethics comments
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.
The authors state
In 1988, a newborn boy, wrapped in blankets, was left under a tree in a Connecticut parking lot. He later died of the frigid temperatures outside. Police did not succeed in finding who had left the infant there. More than three decades later, in 2020, police knocked on the door of a woman who they had identified as the mother of the child. The woman admitted that she had left the boy there after hiding her pregnancy and delivery from friends and family.
The unusual breakthrough in this very old case came as a result of comparing the DNA profile of the infant with DNA data of people who had taken a genetic test with a commercial company and uploaded it into the genealogical website GEDmatch. Through corporations such as Ancestry.com, 23andMe and MyHeritage, customers hope to find information about their ancestry, distant relatives or risks for certain diseases. The genetic testing kits are even popular Christmas gifts. Already around 30 million people have taken a direct-to-consumer (DTC) genetic ancestry test.
These DTC genetic databases are, thus, not only interesting for people wanting to find out about their distant relatives or their genetic risk for ‘coriander taste aversion’ but could also be helpful to law enforcement to identify a suspect. Such a search takes place by uploading a genetic profile from a suspect, found at the crime scene, in either the genealogical website GEDmatch or the DTC company FamilyTreeDNA to search for distant relatives. Through this distant relative, an expert genealogist examines the intersections between the family trees of the relative and the crime scene DNA. The group of individuals identified can then be narrowed down by using information such as the age and gender of the suspect, or where this person was living at the time of the crime until one can eventually zero in on a single individual or a number of siblings. Depending on how complex and distant found relations are, finding a suspect can take less than 2 hours but may also take up to 6 months (as was the case in a Canadian search for a murder suspect).
In the past few years, this investigative genetic genealogy (IGG) has been used in over 200 law enforcement investigations in the USA. It can be used not only to identify perpetrators but also to identify crime victims or unidentified human remains. One of the most high-profile cases is the conviction of the Golden State Killer, a serial rapist and killer who committed his crimes in the 1970s and 1980s. There is an increasing interest in IGG also outside the USA. In 2020, IGG was performed in a Swedish crime investigation, which led to the arrest and confession of a double-murder suspect. This was probably the first time in Europe that IGG led to an arrest. Earlier, also in Sweden, investigators had found investigative leads to help identify human remains of an unknown individual by using GEDmatch. In the Netherlands, a pilot is currently being set up with this method to identify unidentified human remains of people whose death is not caused by a crime. In July 2020, it was revealed that in the Philippines, IGG had been used to successfully track down several men, most likely sex tourists, who had fathered children with local women during their visit to the region, and that IGG will possibly also be used to identify aid workers who sexually abuse minors. In October 2020, police forces in Canada revealed for the first time that IGG had helped them to solve a 1984 murder cold case.
The potential impact of such forensic use of DTC databases for crime investigations is enormous. For example, it has been estimated that a genetic database consisting of only 2% of all US citizens of European descent will be able to find a third-degree cousin in more than 99% of all US persons of that ethnicity. As the DNA of millions of people is in these databases, the chance of finding a distant relative will possibly become almost certain. If an increasing amount of these DNA data would be accessible for law enforcement, it can have major implications for criminal investigations. Although currently, most consumers of DTC companies are US citizens, the kits are also increasingly popular in other countries around the world. Therefore, it is likely that IGG will become more and more effective in identifying suspects outside of the USA. For example, a UK study was able to identify 4 out of 10 anonymous volunteers by uploading their genealogical DNA profile to GEDmatch.
Since 2018, in the aftermath of the Golden State Killer arrest, IGG has received attention in the academic debate as well, especially from genetic genealogy and/or legal perspectives, that often also cover ethical concerns. Regulation of IGG, at the moment, is largely absent and several authors have called or made suggestions for regulatory oversight for IGG. Although there have been interesting discussions on ethical aspects of IGG, including justice, public safety, risk for false positives, privacy and consent, a more systematic analysis from a bioethical perspective has not been performed. A recent extensive review study on IGG recommends that for proper regulation, much more research by bioethicists, among others, on the ethical issues is needed.
In this paper, we aim to contribute to the bioethical analysis on IGG by analysing the limitations of an individual customer-based approach to IGG. The paper runs as follows. First, we discuss two central ethical concerns regarding IGG that may be considered autonomy related: privacy and informed consent. Second, we argue that IGG raises pressing ethical concerns that extend beyond these concepts. In that process, we explore to what extent the ethical approach in the medical clinical genetics context can be helpful for the debate on IGG. We argue that an individual-based model has significant limitations in an IGG context. The debate is further complicated by the transgenerational, transnational, and commercial nature of IGG. We conclude that IGG should be approached not only as an individual but also—and perhaps even more so—as a collective issue.
