Problematizing consent: searching genetic genealogy databases for law enforcement purposes

Abstract

Genetic genealogy databases have become particularly attractive to law enforcement agencies, especially in the United States (US), which have started to employ genealogists to search them with unknown origin DNA from unidentified human remains (suicides, missing persons) or from a serious crime scene, to help identify the victim, or a potential suspected perpetrator, respectively. While this investigative genetic genealogy (IGG) technique holds much promise, its use – particularly during serious criminal investigations – has sparked a range of social and ethical concerns. Receiving consent for IGG from genetic genealogy database users has been argued as a way to address such concerns. While critiques of the importance of consent are well documented in the biomedical and forensic biobanking literature, this has not been explored for IGG. We sought to address this gap by exploring the views of UK stakeholders. Our research question was: what are UK public and professional stakeholders’ views about the importance of the consent process for IGG when used for serious criminal cases? The methodological approach was interview-based and exploratory. Our analysis identified that all interviewees stressed the importance of consent, though interviewees’ narratives pointed to inadequacies of individual-based consent as an ethical panacea for IGG.

Keywords:

• investigative genetic genealogy
• forensic genetic genealogy
• DNA testing
• genetic testing
• consent
• ethics

Introduction

DNA databases have become a valuable resource for genealogy research over the last few decades (Moore 2016), and with an estimated over 30 million people in the genetic genealogy databases,¹ there is an increasing likelihood that individuals will identify a third-cousin or closer match using DNA-based searching (Erlich et al. 2018). These advances have made these databases particularly attractive to law enforcement agencies, especially in the United States (US), and some databases now specifically allow law enforcement access by permitting the upload of DNA profiles to assist with missing person or serious crime cases. Here, law enforcement agencies typically employ the services of a genetic genealogist who will work with any DNA matches retrieved following the upload of DNA profiles, constructing family trees in an attempt to identify the victim or suspect of interest through their network of cousin matches (Greytak, Moore, and Armentrout 2019, Kennett 2019). This technique, known as investigative genetic genealogy (IGG; also called forensic genetic genealogy) has now been used in more than 200 US law enforcement cases (Sederstrom 2020) with some notable investigative successes (Murphy 2018, Greytak, Moore, and Armentrout 2019). In Sweden, IGG has been used to solve a serious murder case (Genomeweb 2020). At present most IGG searches are conducted using the US-based GEDmatch and FamilyTreeDNA databases, both of which have set up specific protocols for law enforcement matching (Skeva, Larmuseau, and Shabani 2020). A third US database, DNA Solves, has been established to allow users to upload their data exclusively for law enforcement usage.

While IGG holds much promise, the rapid move to using these methods has sparked a flurry of ethical and social debate, particularly for its use during serious criminal investigations (Kennett 2019). These are reviewed elsewhere (Samuel and Prainsack forthcoming). Briefly, privacy and data protection questions arise regarding whether database users have a reasonable expectation that their DNA information will be searched by law enforcement in this way (Scudder et al. 2019, Murphy 2018); concerns have arisen about innocent individuals being caught up in an investigation, because a false lead could be generated as a result of mistakes in the genealogy research, especially if an inexperienced researcher is used (Berkman, Miller, and Grady 2018, Kennett 2019); and adoptions or non-paternity events, where the DNA does not align with the presumed genealogical relationship, can potentially be picked up by a genetic genealogy search or target testing because an individual will not match the other people in a genetic network in the expected way. The international nature of the genetic genealogy databases and different standards applied in criminal justice systems around the world also raise ethical and human rights issues (Gleeson 2019). For example, the continuing use of the death penalty is considered to be a breach of human rights but is still used in many US states.

Given these concerns, scholars have pointed to the importance of receiving consent from database users to allow access by law enforcement officers (Berkman, Miller, and Grady 2018). However, while consent is the prevailing model for obtaining permission in the biomedical arena (Tsosie, Yracheta, and Dickenson 2019), it has been repeatedly emphasized that during IGG, an individual who has never had their DNA tested could still be mixed up in an investigation because their relative has permitted law enforcement to search against their DNA profile on a genetic genealogy database (Kennett 2019), and that individual-based consent only reflects individualistic decision-making and does not reflect on the wishes and choices of the extended family of these individuals (Scudder et al. 2019, Tsosie, Yracheta, and Dickenson 2019).

This raises questions about the importance of receiving consent from genetic genealogy database users as a way to address the ethical concerns that are associated with IGG. This is the issue this paper addresses. The aim of the paper is to explore UK stakeholder views about the importance of receiving consent from database users as a way to address IGG's associated ethical concerns. The importance of exploring stakeholder views of any new technology is well documented: it guarantees public and professional stakeholder values and beliefs about the technology, and in this case about the consent process, are considered during any responsible implementation and use of the technology (Stilgoe, Owen, and Macnaghten 2013). We achieve our aim empirically through a series of 45 interviews with UK professional and public stakeholders using the research question: what are UK public and professional stakeholder views about the importance of the consent process for IGG when IGG is used as an investigatory tool for serious criminal cases? Our focus on IGG for serious criminal cases reflects the approach adopted in the interim IGG guidelines published by the US Department of Justice (United States Department of Justice 2019) and the approach taken by GEDmatch and FamilyTreeDNA (see below). Our focus on the UK is because while the UK benefits from having a high percentage of DNA profiles per capita stored on the national DNA database (Kennett 2019) and makes good use of this database for familial DNA searching (Maguire et al. 2014),² IGG could potentially be used for some serious criminal cases in which no match was identified in the national DNA database; a small convenience sample pilot study has already demonstrated the methods would work in the UK setting (Thomson et al. 2020). Moreover, and crucially, nearly 5 million UK citizens have had their DNA tested by genetic testing companies, including GEDmatch and FamilyTreeDNA,³ and therefore have a stake in IGG testing whether or not it is permitted in the UK, making the exploration of their views on the matter of consent particularly important.

Background

Consent for biomedical and forensic biobanking

The process of receiving consent is considered a key component of any ethical governance approach to responsible biobanking in the biomedical arena. It is well established that an appropriate consent process acts to ensure the autonomy of the user, allowing them to voluntarily choose whether or not to donate a bio-sample to the biobank after being informed of the specific set of associated risks and/or benefits with such donation. While consent is considered routine practice, it is far from standardized. Debates remain about the purpose of consent; the type of consent process needed during the donation procedure (specific [case-by-case based each time the sample is used in research], broad [one-off blanket permission for all research to be permitted], or dynamic [enables individuals to update their preferences over time]); and the scope and level of information required to be provided. Alongside this, an emerging social science and anthropological critique argues that debates surrounding consent are framed too narrowly, with too much emphasis on the information aspect (Hoeyer and Lynoe 2006, Tindana et al. 2019). They reject that consent can act as an “ethical panacea” and can alone lead to ethically responsible practice, rather, they emphasize that ethical consideration would be better placed in the institutions in which individuals place their trust and point to the needs for appropriate ethics governance approaches that consider issues such as openness, transparency and accountability (Hoeyer and Lynoe 2006, Burgess and O’Doherty 2019).

Whereas biomedical biobanks are constructed as instruments for fighting disease and improving public health, biobanking in the criminal justice system – in the form of national forensic DNA databases – function to identify suspected perpetrators of crimes and increase public security (Machado and Silva 2015). Less work has explored consent in this setting. In fact, some authors stress that little analogy applies between the two contexts because in medical consent the choice to donate can ultimately be left to the individual, whereas in national forensic databases donation is often forced, and databases are controlled by the government or police services. Other scholars have tried to draw debates back to questions of consent by highlighting that some individuals must consent to their DNA profiles being uploaded onto forensic DNA databases, including families of missing persons (Katsanis et al. 2018); those whose DNA is used during dragnet searches, and those who donate their DNA to forensic databases (Machado and Silva 2009). Machado and Silva (2009) emphasize that in these consent processes, and similar to what is seen in biomedical biobanking, an individualistic approach to ethics is emphasized, with consent being mobilized as a tool to drive home the specific values of individual choice. This, they say, neglects the consideration of social, collective, economic and even political matters, for example, those tied to societal good, public benefits and the need for trustworthy biobanking governance structures (Williams 2005, Machado and Silva 2015).

Consent for investigative genetic genealogy

While much work has explored the consent process in biomedical and forensic settings, perhaps due to the newness of IGG, less work has focused on the importance of the consent process for these methods. Indeed, this paper aims to fill this gap in knowledge. For those who have discussed consent, scholars argue that it is important that both the benefits and risks of the technology are integrated into the consent process, rather than being buried in the small print of terms and conditions (Syndercombe Court 2018). An international review of 22 companies’ and databases’ policies showed that only four companies have provided additional information on how law enforcement agencies should request permission to use their services for law enforcement purposes (Skeva, Larmuseau, and Shabani 2020). Two of these companies were GEDmatch and FamilyTreeDNA – the two companies that permit IGG, and these companies have each taken a different approach to consent. Both databases do not allow specific case-by-case consent, but rather ask for broad consent, though – more in line with dynamic consent – with the option of flexibly changing the consent settings at any time. However, while GEDmatch has adopted an explicit opt-in strategy, FamilyTreeDNA has opted all their existing customers into IGG by default, except for European citizen users, who were opted-out, presumably due to implications in terms of the European Union's General Data Protection Regulation (though they can choose to opt back in). Commentators have queried the ethical acceptability of both these forms of consent: the GEDmatch consent process provides no detailed information about the risks of IGG, and even encourages customers to opt their DNA profile into IGG; FamilyTreeDNA's opt-out has been argued to not equal a proper choice (Larkin 2019), not least because individuals have a tendency toward inertia, particularly when decisions are complex, meaning that they are unlikely to change their opt-in preferences related to consent on the website (Ram and Roberts 2019, Russell 2019). Alongside these concerns, the consent process at both GEDmatch and FamilyTreeDNA has been complicated by numerous changes to their policies – something seen in studies which have explored genetic testing company's policies more broadly (Roberts and Hawkins 2020).

Methods

Methods have been described in detail previously (Samuel and Kennett 2020). In brief, sampling of interviewees was purposive and non-representative; we were not interested in receiving representative responses, but rather we wanted to garner the diverse range of views interviewees had about the consent process. Professional stakeholders were recruited through second author contacts (Samuel and Kennett 2020); web searches; and snowballing. Genetic genealogy users were recruited online via social media and online advertising. Recruitment occurred between September-November 2019. Interviewee demographics are reported in Table 1. Most professional stakeholder interviewees (n = 16/23) and all database users, bar one, were from the UK. All the genetic genealogy users interviewed were white and predominantly over 40 years. We understand that, particularly for members of the public, we were sampling from a heterogeneous group of individuals that represent a wide range of views and experiences. As much as possible we tried to access this range of views and experiences by interviewing across a broad range of demographics, and also interviewing to data saturation. While we achieved data saturation, we do note – both here and below – the limitations of our study due to some demographics being unrepresented.

Table 1. Demographics of interviewees.

Professional stakeholders* (n = 23)	Females (n = 17)	Forensic scientist or expertise in area (n = 4) [forensic scientist]
		Worked at/owned a genetic testing or genealogy company (n = 5) [GG]
		Law enforcement (n = 6) [CJS]
	Males (n = 6)	Academia (n = 3) [academic]
		Role in policy and/or ethical governance (n = 2) [policy]
		Professional/self-reported experienced genealogists (n = 5) [genealogist]
Genetic genealogy users (n = 22) [user]	Females (n = 13)	High School education (n = 4)	25–39 years (n = 1)	Knows victim of serious crime(n = 8)	Association with law enforcement (n = 9)
	Males (n = 9)	College Diploma (n = 4)	41–60 years (n = 10)	Did not know a victim of serious crime (n = 14)	No association with law enforcement (n = 13)
		Higher education (n = 14)	60+ years (n = 11)

*Two stakeholders had (or had had) more than one professional role and were classified in both roles. Acronyms in square brackets represent interviewees’ demographics as presented in the findings.

The interview schedule explored interviewees' views on IGG, including their awareness of potential benefits and risks, their views on oversight, as well as the circumstances under which they perceived the use of this technology to be acceptable and why, including issues of consent. Interview data was analyzed inductively. Given the nature of qualitative analysis, quantitative data are not presented in the findings; the key purpose of the analysis was understanding the range of interviewee perspectives, though we have noted if a majority or minority of interviewees held a specific viewpoint. The study received ethics clearance from King’s College Research Ethics Committee Research Ethics Committee (MRA-18/19-13100).

Results

All interviewees emphasized the need for law enforcement authorities to receive consent from database users before they used IGG. The ability to consent to the use of these methods was seen to provide database users with a certain amount of control and ownership over their data, and a strong feeling emerged that whether or not database users intended to support law enforcement searching against their DNA information, they should still be given a way to exercise their choices;

I think people have got to have the right to block it (interviewee 14-user);

I would very, very much doubt whether what I signed up to five years ago would include it being speculatively searched by the Met Police. So, they would obviously have to notify me … and I would say ‘yes’. (interviewee 1-CJS)

Consent was also perceived to provide respect for privacy, especially for those who may be cautious about openly giving law enforcement permission to search these databases Some interviewees viewed this as especially important in the current landscape of anxieties around data use and misuse. Moreover, consent was perceived as necessary because of the changing purpose of the genetic genealogy databases – from the originally intended purpose of identifying relatives, to potentially aiding law enforcement;

I thought it would be available to the people I wanted it to be available to but not organisations or third parties … [to] … trawl through it for other reasons than what the intention is. (interviewee 13-user)

Finally, some interviewees explained that because IGG has potential implications for their relatives “who have not given any such consent” (interviewee 19-policy), and whom it was difficult to logistically ask for consent (“if I said to my children … is it ok if I put my DNA on a website? … .Where do you go out of that circle to stop asking for permission” (interviewee 44-academic/database user)), it was important that database users had the chance (and choice) to think through the potential implications for family members. These implications included the potential for neighbors and workmates to pass prejudiced judgement against their family members because of the presence of police at the person's home; police will come to your house … and your neighbours will know … and your work mates may know this … .the seriousness is sometimes underestimated (interviewee 29-academic/policy). Some interviewees also spoke about the emotional ramifications to both individuals and families even in instances when the suspected perpetrator was guilty of a crime (interviewee 25-user; interviewee 30-CJS). User interviewee 13 expressed a feeling of guilt at the thought of a family member being identified via IGG;

The reason I didn't want my data being used is because I was thinking what if there was somebody related to me that … had done something wrong … I wouldn't want them tracking down my children or something. Even if it was a distant cousin, I’d probably feel a bit guilty.

This importance of thinking through the potential implications for family members was particularly emphasized by interviewees who were concerned about police officers’ potential treatment of their relatives. These particular interviewees drew on examples of police reports that had already revealed the identities of the relatives involved in U.S. investigations (interviewee 2-genealogist). Families of individuals who have committed serious crimes, explained interviewee 15, are not always treated with dignity or respect, with police officers not always “behave[ing] appropriately” (interviewee 8-user) and sometimes being too “heavy handed” (interviewee 2-genealogist) during their investigations (“I have zero faith in that I’m afraid” (interviewee 18-academic)).

Not all interviewees worried about these concerns; most interviewees prioritized the apprehension of a suspected perpetrator over and above any concerns for relatives (“if my brother or sister or whatever has done something wrong, well they’re going to be quite vulnerable, but then again they shouldn’t have done it” (interviewee 31-user)), and had difficulties articulating any “downsides” (interviewee 12-user) to this form of searching, which was cast as an aspect of ordinary police practice ([REMOVED]). Nevertheless, these interviewees still viewed consent as an important aspect of IGG.

Overall then, all interviewees were able to articulate a range of reasons why they perceived consent to be needed for IGG, including a need for ownership, a respect for privacy, and because of the potential implications on family members.

Consent in practice

While interviewees viewed consent as a key aspect of IGG, they had heterogeneous views about what this might look like in practice. While all agreed that the consent process needed to be informed so that the interests of those uploading their DNA data to databases were respected, and so that database users fully understood the implications of their decisions, interviewees had different interpretations of what this meant. Many interviewees, particularly professional stakeholders, disagreed with a tick-box approach to consent, or an approach in which information was buried in “the small print” (interviewee 43-forensic scientist). Interviewees were aware of society's normalization to checking boxes on websites without reading the terms and conditions, and were concerned that this temptation would also exist for IGG. In fact, user interviewee 36 laughed when they were asked if they had read the information about law enforcement officers accessing the DNA database. They remarked;

I guess I should be a bit more savvy with the agreements I’ve flicked through … I just think next time I’m about to commit a murder I’ll have to read the agreements first just in case. But it wasn't in my plans for this week so … .

Because of this, many interviewees (professional stakeholders and some database users) felt that greater lengths were needed to ensure consent was informed and therefore ethically permissible. However, interviewees’ experiences with GEDmatch's consent process suggested that too much information was also potentially problematic: some interviewees viewed the consent process as too “wordy” and “a lot to take on board” (interviewee 25-user); others explained that it was overwhelming to be faced with so much information – and with terminology that they had a difficult time “getting [their] head around” – when they had simply come to the website to upload their DNA for a different purpose;

when you’re filling in any form there's all sorts of tick boxes, tick to agree to this, and tick to do that … This police enforcement, I didn't quite understand the language. I couldn't quite get my head round ‘what were they actually asking here?’ And then the penny dropped eventually and I thought ‘ah, I think I know what this is’. [I was] just not familiar with the terminology, not even familiar with the concept. I hadn't really thought it through. I was just uploading my DNA. (interviewee 22-user)

User interviewee 39 was also concerned about consent in terms of absent members of the community – those who have contributed their DNA information to the database, but whose data was being managed by a third party (possibly a family member or local genealogist). This interviewee explained that it was difficult for these individuals, who could often be more elderly, to understand the implications and concerns related to law enforcement access to these databases. Providing an ever-increasing amount of information about IGG, which database users needed to digest in order to have their DNA on the database for recreational purposes, was not the solution, but was rather described as “tormenting”;

If it was against my personal DNA data, I would probably accept it … for peoples' kits who I manage, especially people that are in their seventies, eighties … you don't really want to be tormenting them with this kind of thing.

This also meant that in certain circumstances, the decision whether or not to consent to IGG was made by the individual user on behalf of family members.

Moreover, it seemed that the information provided during this process was not always remembered. When user interviewee 36 was asked whether they opted ‘in’ or ‘out’ to law enforcement being given access to search against their DNA data on GEDmatch, they remarked; “I can’t remember what I said one way or the other I’m afraid.” User interviewee 23 spoke about “skimming through the small print” which meant they could not “honestly recall whether there was anything about it [their DNA] being used” by law enforcement.

In spite of these concerns, a minority of interviewees called for a more informative consent process beyond the dichotomous choice of support/no support for IGG. They wanted to see questions about, for instance, the specific resident country of law enforcement officers who would be accessing the database (only UK law enforcement officers, US too, or all countries?). Questions also included the types of crimes or cases for which IGG was to be used (missing person cases, serious crimes only?); and relatedly, the potential penalty sentence for any such crime. While some interviewees were seemingly indifferent to these questions (“it [any of the answers to these questions] wouldn’t bother me personally” (interviewee 20-user)), many interviewees had certain values, beliefs, or religions that influenced their views. As illustrated in the extracts below, capital punishment was one example that elicited strong opinions; another was the abandonment of a new-born baby, which is usually treated as a charge of infanticide in the UK but as first-degree murder in many US states;

I think consent needs to be broken down a bit in terms of: if I had the option to consent to find missing persons I would opt in; if I was given the consent to opt in on finding violent criminals whereby if the person is found guilty that they cannot be subjected to capital punishment I would opt in … […] … I come from like a Catholic background … capital punishment or anything like that, I think then [I] would have a serious problem … .if it conflicts with your moral values - the end result of the law enforcement - then it becomes a problem (interviewee 39-user);

mother under whatever traumatic circumstances at a young age … abandons a baby and then finds herself on death row some time down in the future … . And that's a highly problematic outcome, it certainly would be for me … I’m morally opposed. (interviewee 29-academic)

Mobilizing consent

Alongside discussions about how to develop an ethically responsible consent process, interviewees’ narratives also highlighted different individual interests for mobilizing consent. We discuss these below.

Silencing those with concerns

In contrast to what we saw above, for those who particularly championed IGG (many database users and some professional stakeholders), approaches to consent that gave database users a choice to opt in/out of law enforcement searches were not supported because they reduced the utility of IGG: smaller genetic genealogy databases were perceived to equate to a lower chance of identifying a “match”;

GEDmatch … was much better before they introduced the opt in because it was open. Since they introduced the opt in the usefulness to law enforcement dropped dramatically and out of something like 1.2 million in their database only 185,000 have opted back in, which has a huge effect. (interviewee 37-user)

Rather, these interviewees preferred consent as a tick-box practice that allow users to upload their data only if they agree to IGG. In an even stronger view, the appearance of a short statement on the genetic genealogy database website – either explicitly and openly, or buried deep in the terms and conditions – was sufficient for consent (“I kind of feel if people don’t read the small print then that’s more fool them” (interviewee 23-user)). Armed with this information about IGG, explained these interviewees, the decision – and responsibility – to upload DNA information to the database was in the hands of database users; “at the end of the day it’s the user’s responsibility … if at any time you’re not happy with how the company you’ve given access to your DNA uses it, then you should just remove it” (interviewee 16-user). This emphasis on user responsibility was paramount to these interviewees, who believed that if users were too irresponsible to read terms and conditions, they had no grounds to “complain”; “we’re all clever with hindsight and people complain retrospectively. So, people can’t not read the terms and conditions and then complain” (interviewee 44-academic/database user). This perspective, held by a number of interviewees, was also evident in the extract below;

I’m at the risk of saying people are stupid at the moment because all the information is there. When you get your DNA tested there's loads of information … it's just that people go ‘oh no, I’ll just have this done’ and they don't bother reading the small print … (interviewee 17-user)

This individualistic view of the concerns related to IGG, i.e. that individuals could either accept the fact that law enforcement would have access to the databases and upload their data, or not, silenced other concerns about IGG, because in this view, all issues were addressed in the act of this acceptance. No perceived need was seen for further societal discussion about the implications of IGG because any concerns about IGG were placed in the hands of the user to either accept or not.

However, a number of interviewees rejected this conceptualization of consent and the fact that database users should be responsible for failing to read the terms and conditions of a genetic genealogy database website. To provide just one example, academic/database user interviewee 44 explained that knowledge is fragmented, and we cannot be expected to understand the intricate details of all the “things that we are using” in ordinary life;

I’ve never read my terms and conditions on purchasing my washing machine. I don't actually know how to make a car … .I know you have to put petrol in it and I don't know anything else … .So because we’ve become fragmented from the things that we’re using and making … people understanding the terms and conditions of GEDmatch is the same level of not knowing anything as anything else.

Commercial implications of consent and genetic database owners

A number of interviewees highlighted that while genetic database owners mobilized and advocated the need for consent, this was often driven by their own commercial self-interests because, as they explained, the public are unlikely to continue buying genetic testing kits while there is a possibility that law enforcement could search against their uploaded DNA information. As such, IGG would be perceived as particularly damaging to the commercial viability of the genetic database industry, leading to a loss in revenue;

I think if they [genetic database owners] announced … that … they’re now going to be sharing information [with law enforcement], then a lot of people would turn round and say ‘no, you’re not doing that, forget it, wipe my DNA’ … so I think there's a commercial complication to come from this as well. (interviewee 1-CJS)

Corroborating this, all interviewees who worked for, or were genetic database owners themselves, spoke at length about the importance of asking database users for consent for IGG (“it comes down to … in very simple terms … consent … and that has been my take on it from the very beginning” (interviewee 6-GG)), which was viewed as an “obligation of the person operating the project [database]” (interviewee 3-GG). This obligation was quickly drawn back to commercial interests as these interviewees underscored the relationship between consent, public trust, and ultimately people's views and opinions regarding genetic databases. Promoting the necessity of the consent process provided a way for genetic database owners to show willing to the wishes of their database users, ensure the public are comfortable with how their data is being stored and accessed, and potentially increase revenue. One database owner spoke very candidly about this, linking the necessity for consent to trust, and ultimately public (i.e. consumer) support for the sector;

most people … don't appreciate the risks … .And it will be some blow up of some major thing that is the obviously wrong use of the DNA, it makes major headlines around the world. And negatively impacts the industry and peoples’ trust and usage of the databases. (interviewee 32-GG)

Database owner interviews were dominated with discussions about how to keep consumers informed and educated about the technology. Others championed public education: they were concerned about circulating misinformation about IGG, and believed public education offered a way to counter this, and reassure database users. This was in spite of the fact that such a deficit model of public understanding (whereby hostility towards science is attributed to a lack of understanding of the science, and it is presumed that an increase in understanding in the science will lead to more support for it) has been repeatedly debunked.

While genetic database owner perspectives on implementing consent processes is understandable given both the commercial landscape in which they operate, as well as the need to ensure consumers are comfortable with using their databases, some interviewees were particularly cynical about this commercial mobilization of consent. For these interviewees, database owners’ pushing the need for appropriate consent was either viewed as nothing more than a marketing bid; “I see this being able to opt in or not as literally just a marketing issue for the DNA companies themselves” (interviewee 16-user), or as window dressing the desire to avoid potential regulation (Samuel and Farsides 2018, Wagner 2018). In fact, interviewees who worked for, or were genetic database owners themselves, explicitly agreed with the latter reflection;

I am working very hard that we self-regulate within the industry … I think the regulation has to come from people who know what's going on and that's people within the industry. I do not want any government regulation because they don't understand what they’re doing. (interviewee 7-GG)

Consent as an ethical panacea and the missing element of trust

Some professional and public stakeholder interviewees were so passionate about the importance of consent that they viewed it as an ethical panacea. It was thought that, if implemented appropriately, consent could act as a boundary between ethically acceptable and unacceptable behavior – a way to mitigate many or all of the ethical concerns voiced about IGG. Interviewee 3 explained that if consent was “proper,” then “a good number of them [public users] would trust and would be a fan of catching criminals.” Academic interviewee 29, too, felt that many of the ethical issues related to IGG could be mitigated via an appropriate informed consent process; “if it was truly informed consent if people really knew what was going to happen and what could happen then I think it would be a lot less controversial and concerning than it is currently.” This view of consent, however, failed to capture that consent alone is rarely enough to ensure appropriate ethical governance. In fact, the extensiveness of interviewees’ concerns about IGG was intricately tied to the degree of trust interviewees placed in law enforcement and/or the government (the “state”) to use these methods responsibly, and therefore pointed to this as a key issue for ethics consideration. Interviewees supporting the use of IGG spoke about their trust in the government both explicitly (“I’m very trusting in that way, that it will be used for the right thing” (interviewee 14-user)), as well as implicitly through their open support of the introduction of a nationwide, government-run, DNA database (Machado and Silva 2016). Trust in the government was context-specific; many interviewees viewed the UK government as trustworthy, while distancing themselves from the governments of other jurisdictions. China and Russia were common reference points of untrustworthiness, as was the US; “in the hands of a dictatorship … they [DNA data] can be used very dangerously … but … in a democracy they can be used … reasonably safely” (interviewee 10-CJS); “I’m fairly convinced the UK handles its data generally very well. … […] … what goes on in the States at the moment would be perceived as an abuse” (interviewee 43-forensic scientist).

These same interviewees nearly always also spoke about their implicit trust in law enforcement authorities to conduct themselves responsibly during criminal investigations, emphasizing that reasonable safeguards were already in place within the criminal justice system to ensure appropriate use of IGG (interviewee 41-CJS). Any concerns about inappropriate use were dismissed as “paranoia” (interviewee 8-user); and errors in law enforcement judgment were re-imagined as mistakes by police officers who are doing the best they could; “it’s human, people make mistakes. You do the best you can” (interviewee 11-user).

In contrast to the above, other (mainly professional stakeholder) interviewees spoke about their wariness of the government. Rather than drawing on the “them and us” narrative to distance their faith in the UK government from other jurisdictions, the harms that could eventuate in other jurisdictions were a stark reminder of the necessity for caution when placing faith in the government. They explained, “things can change” (interviewee 40-CJS), such that the government could enforce the use of IGG inappropriately. The instigation of eugenic policies was pointed to as a reminder of what can happen in worst-case scenarios when governments act inappropriately;

in 1940 … imagine our DNA, if you could trace someone in Germany and go actually you’re Jewish, off you go … […] … you’re providing information to a mass database which is being used in the intent of prosecuting someone. (interviewee 13-user)

These interviewees, too, held a remarkable distrust of law enforcement authorities. Some thought that law enforcement officers’ lack of understanding of IGG could lead to them “unwittingly pursue[ing] the wrong branch of the right family … [and] has already happened in one case” (interviewee 35-GG). Interviewee 34, a forensic scientist, drew on their professional experience to similarly emphasize the need to be mindful of the errors that already occur during police work using DNA evidence; “when the police go with a fixed idea in their mind of who they think their perpetrator is and … .all they do is follow the avenues that confirm that perpetrator rather than keeping an open mind.” Other interviewees were more concerned about “rogue” law enforcement officers who, if allowed to access genetic genealogy databases, would also have access to the DNA-related information of a specific individual which could potentially be used for harmful purposes (interviewee 30-forensic scientist). Finally, user interviewee 15 stressed that a “complete trust in law enforcement and the judicial system” originated only from those who were unaware of potential miscarriages of justice.

Database user interviewees’ perceptions of, and trust in law enforcement, and the criminal justice system more broadly, were particularly tied to their experiences. As summarized in the extract below, those who had no previous interactions with police officers seemed to view them positively through “rose tinted” spectacles; those who had previous interactions formed their opinions based on these limited experiences (Wilson-Kovacs 2014);

my [relative] … is completely anti the law enforcement having any access to DNA on these sites. He thinks they have too much power already and they abuse it. I was quite surprised. We hadn't talked about it before and I was very surprised at how strong his opinion was … I think when he was a teenager, he was a bit wayward, so it's your life experience isn't it? His experience with the police force isn't as sort of rose tinted as mine. I see them as helpful people, he sees them as sort of baddies. (interviewee 16-user)

Perceptions and trust were also framed by the media. The extract below is just one of many examples in which interviewees referred to a programme or book they had watched or read about law enforcement, and which seemed to be intricately tied to their views on law enforcement practices;

one of the things on this programme I was watching [interviewee describes programme at length] … so I think they [law enforcement] can't just randomly go ‘oh right, that looks like a second cousin, we’ll go and bang on their door’. They need to do a little bit of work. (interviewee 17-user)

Discussion

While all interviewees placed importance on the need for consent for the use of IGG, differences emerged regarding what this process should look like in practice. Our findings resonate with those extensively seen in the biomedical biobanking and other literature – that individuals place different emphases on what, and how much information they believe should be provided during the consent process to ensure individuals are informed, and that individuals may not read (and cannot always be expected to read (M’Adrigal 2012)) the detailed and dense information provided in the terms of service. Even if the information is more accessible, they may forget what they have read. There is no one-size-fits-all approach that can address all these issues. This can lead to individuals on the one hand calling for more information, and on the other hand, struggling to always understand the information provided (Hoeyer 2003, Eisenhauer et al. 2019, Perrault and McCullock 2019).

Furthermore, while we saw that some interviewees viewed consent as an ethical panacea (Corrigan 2003), or emphatically underlined the value of the need for consent merely to drive their own motivations and interests, our findings also reflect the biomedical and forensic biobanking literature in that they revealed that placing too much emphasis on a consent approach to ethics governance only examines those issues that are reflected at the individual level. This failed to account, for example, for individuals who, when uploading DNA profiles on behalf of their relatives, were opting in or out of consent based only on their own views; or for the implications on relatives who may be affected by IGG, but who have not taken a DNA test and who have not consented to these methods being used.

The focus on individual-based consent also narrows ethical discussion by shielding other substantive political and societal issues from critical scrutiny (Hoeyer and Lynoe 2006, Burgess and O’Doherty 2019, Tindana et al. 2019, Tsosie, Yracheta, and Dickenson 2019, Williams 2005, Machado and Silva 2015). This was evident in the interviewee narratives of our most avid supporters of the technology who mobilized consent to place ethics responsibility onto the database user, therefore forbidding a more shared understanding of responsibility between individuals, institutions and society (Williams 2005), and ignoring other ethical consequences of IGG – that a range of human rights issues existed when considering IGG at an international level; and that IGG led to a re-purposing of the intentions of genetic genealogy databases.

As is increasingly well-recognized in the biomedical and forensic biobanking literature, it may be better to broaden our ethical gaze to the level of communities, infrastructures and society because this forces us to interrogate the forensic use of DNA in more macro, political terms relating to public interest, societal good, state power and oversight mechanisms (Williams 2005, Machado and Silva 2016), and can help us analyze other issues tied to hierarchies of power, discrimination, and the need for trustworthy biobanking governance (Caulfield and Murdoch 2017). In fact, our findings identified trust as a vital component of any ethics governance structure for IGG because of its importance as a factor in decision-making related to participation – something also repeatedly identified in the biomedical and forensic biobank literature (Hoeyer and Lynoe 2006, Machado and Silva 2016, Caulfield and Murdoch 2017, Machado and Silva 2019, Samuel and Dheensa 2018, Burgess and O’Doherty 2019, Tindana et al. 2019). Trust in this instance referred to the government, criminal justice institutions, and law enforcement officers, and was tied to interviewees’ own (sometimes only limited) personal and/or institutional experiences (Wilson-Kovacs 2014); any previous or current engagement with law enforcement officers or the criminal justice system (Duster 2006); and from what they watched or read in the media (Ley, Jankowski, and Brewer 2012).

All of the above concerns require us to consider the adoption of a more societal approach to consent, such that the process is developed in partnership with not only database users but also the wider public (Tsosie, Yracheta, and Dickenson 2019). To do this, greater consultation would be required with members of the public who are not genetic genealogy database users to gauge their understanding of the issues. Consideration would also have to be given to the fact that some of our interviewees wanted to see a more layered approach to consent, with the ability to select the jurisdictions that are given access to their DNA profile and the circumstances under which their data is shared. We envisage that this consultation process would be similar to those conducted in other areas of law enforcement activity, such as the use of CCTV and facial recognition technology, and would function to further trust in the use of IGG, as the public became assured that they had been engaged and listened to. This consultation would need to include people of various ethnic groups, ages, and socio-economic status – a representation which was lacking in our study. This is particularly important given our findings, which supported a correlation between interviewees’ views on IGG and the trust they placed in law enforcement and/or the government: given that all our interviewees self-reported white, and given, for example, that they were less likely to have had experiences of any structural racism and/or discrimination that has been reported in UK law enforcement (Freeman-Powell 2019), our interviewees were unlikely to reflect the full range of views, experiences, trust and perceptions that the public (and perhaps professional stakeholders) have about law enforcement and/or the government (here we refer to the fact that, as some of our interviewees pertained to, non-white individuals can be treated differently during criminal investigations than those of white skin color). In addition, we have limited our study to an exploration of stakeholder views on the importance of consent for IGG use during serious criminal investigations. Such views may likely differ for considerations of this technology in less serious criminal cases such as burglary, during which the UK forensic DNA database is routinely used. While the use of IGG for such crimes is at present not permitted on GEDmatch and FamilyTreeDNA, as the technology matures it would be important to explore public and professional perceptions about the use of IGG in these circumstances.

A solidarity-based approach also offers a way to approach the governance of IGG more generally. This approach, which also supports wide public engagement, has been discussed prominently in the biomedical biobanking literature (Prainsack and Buyx 2013), and to a lesser extent in the forensic DNA literature (Machado and Silva 2015). The approach goes beyond consent, also aiming to foster public trust and legitimization by placing strong ethical emphasis on people's willingness to engage in activities that may carry some risks for the benefit of others. In the case of IGG, this would mean database users permitting IGG (and accepting some of the risks attached to this) because of the benefits that may come from it. Taking a solidarity approach, a participant must place a certain amount of trust in an institution to act in a trustworthy way, and the institution must live up to it (and put good governance models in place to ensure this). Rather than a ‘responsibilization’ of the individual (Rose 1999), as we saw above, this model places the responsibility on institutions to be transparent about their own stakes and interests, and about the types of harms that may not be foreseeable. Such an approach also places the responsibility on institutions to act appropriately and transparently throughout the whole process of IGG, including when considering issues of data protection. While not the focus of this paper, such issues have been a key concern when considering the use of IGG, particularly given the reliance on private companies and/or genealogists during the DNA sequencing and/or database searching stages of IGG – companies and/or individuals who may or may not protect data to appropriate standards. As Machado and Silva (2015) state, an approach based on solidarity includes the principles of respect, veracity and openness, and requires “reinforcement of the subject’s right to be informed and to give consent; [and] transparency with regard to the purposes, risks, benefits and actors involved in processing personal data.” It is, however, important to stress that a solidarity approach is likely to have limitations. Given that interviewees’ views about IGG were underscored by notions of trust in the wider functioning of the criminal justice system and/or the government, a solidarity approach is unlikely to address, at least in certain instances, the deep-seated anxieties our interviewees held both about how law enforcement officers and other members of the criminal justice system and/or government conducted themselves within the institutional infrastructure – an infrastructure which contains structural racism and/or discrimination. As such, it is questionable whether a solidarity approach could truly lead to a situation in which the risks and benefits of IGG were equally distributed. Nonetheless, we argue, a solidarity approach is a good place to start to build trust through trustworthy governance of this technology.

Conclusion

Overall, our findings suggest that, in line with literatures on consent in the biomedical and forensic biobanking settings, interviewees place importance on ensuring that there was an appropriate consent process for IGG for use in serious criminal cases. However, defining what this consent process should look like was more complicated. Moreover, our findings suggest that focusing on individual-based consent narrows ethical discussion by shielding other substantive political and societal issues from critical scrutiny. One particular issue that emerged from our findings was the need to adopt a trustworthy ethics governance approach for IGG. If at any stage the UK considers the use of IGG for serious crimes, part of this governance approach will require that the UK government, as well as law enforcement agencies, act in a trustworthy manner, including practices of public consultation, and openness and transparency about when, why and how IGG is used.

Acknowledgements

We thank Barbara Prainsack for reading a draft of the paper and providing invaluable feedback. We thank all our interview participants for their valuable time.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 https://www.psychologytoday.com/us/blog/the-lost-family/202005/its-20th-anniversary-dna-testing-reaches-tipping-point.

2 Familial searching is different to IGG (see Maguire et al. 2014). Having said this, some of the oversight mechanisms and infrastructure put in place for familial searching (such as a specialist oversight committee) could potentially also be used for IGG.

3 https://www.prnewswire.co.uk/news-releases/-instafam-ancestry-reveals-boom-in-dna-testing-as-brits-hunt-for-real-connections-842510678.html.