Problematizing consent: searching genetic genealogy databases for law enforcement purposes

Samuel, Gabrielle; Kennett, Debbie

doi:10.1080/14636778.2020.1843149

Cited by 13 publications

(16 citation statements)

References 34 publications

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“…Merely stating the presence of commercial-biobank interactions may suffice for some participants to be able to make a decision about whether to participate in a biobank [ 23 , 24 ]. Furthermore, it may reflect the fact that providing further information may be difficult to do in the complex and changing nature of public-private sector relationships.…”

Section: Discussionmentioning

confidence: 99%

Exploring how biobanks communicate the possibility of commercial access and its associated benefits and risks in participant documents

et al. 2022

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Background Biobanks and biomedical research data repositories collect their samples and associated data from volunteer participants. Their aims are to facilitate biomedical research and improve health, and they are framed in terms of contributing to the public good. Biobank resources may be accessible to researchers with commercial motivations, for example, researchers in pharmaceutical companies who may utilise the data to develop new clinical therapeutics and pharmaceutical drugs. Studies exploring citizen perceptions of public/private interactions associated with large health data repositories/biobanks indicate that there are sensitivities around public/private and/or non-profit/profit relationships and international sample and data sharing. Less work has explored how biobanks communicate their public/private partnerships to the public or to their potential research participants. Methods We explored how a biobank’s aims, benefits and risks, and private/public relationships have been framed in public facing recruitment documents (consent forms and participant information sheets). Results Biobank documents often communicate their commercial access arrangements but not the detail about what these interactions would entail, and how risks and benefits would be distributed to the public. Conclusion We argue that this leads to a polarised discourse between public and private entities and/or activities, and fails to attend to the blurred lines between them. This results in a lack of attention to more important issues such as how risks and benefits in general are distributed to the public. We call for a nuanced approach that can contribute to the much-needed dialogue in this space.

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Section: Discussionmentioning

confidence: 99%

Exploring how biobanks communicate the possibility of commercial access and its associated benefits and risks in participant documents

et al. 2022

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“…Notably, improved informed consent has been presented in the literature as a way of alleviating some ethical concerns of IGG. 4 23 In a recent interview study by Samuel and Kennett, 6 some participants seemed to regard informed consent as an ‘ethical panacea’; they were of the opinion that most ethical problems could be mitigated if consent was implemented properly. In reality, it may well be that too much weight is given in the ethical debate on IGG to the concept of informed consent.…”

Section: A Collective Perspectivementioning

confidence: 99%

“…Notably, Samuel and Kennett state that ‘focusing on individual-based consent narrows ethical discussion by shielding other substantive political and societal issues from critical scrutiny’. 6 There is, thus, reason to believe that the value of informed consent as the solution to pressing IGG problems is questionable. Moreover, this may not only apply to the ethical debate but also to the legal one; the UK Biometrics and Forensics Ethics Group recently stated in a report about IGG that the legality of obtaining this kind of sensitive information on the legal basis of informed consent alone, is questionable, considering the EU Law Enforcement Directive and Article 8, protecting the right to private life, of the European Convention on Human Rights.…”

Section: A Collective Perspectivementioning

confidence: 99%

“…5 In the past few years, this investigative genetic genealogy (IGG) has been used in over 200 law enforcement investigations in the USA. 6 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.…”

Section: Introductionmentioning

confidence: 99%

“…4 13–21 Regulation of IGG, at the moment, is largely absent and several authors have called or made suggestions for regulatory oversight for IGG. 17 18 20 22–26 Although there have been interesting discussions on ethical aspects of IGG, 6 13 18 23 27 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.…”

Section: Introductionmentioning

confidence: 99%

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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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Challenges in using genetic genealogy in forensics

Yadav,

Sharma

2024

Next Generation Sequencing (NGS) Technology in DNA Analysis

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Problematizing consent: searching genetic genealogy databases for law enforcement purposes

Cited by 13 publications

References 34 publications

Exploring how biobanks communicate the possibility of commercial access and its associated benefits and risks in participant documents

Exploring how biobanks communicate the possibility of commercial access and its associated benefits and risks in participant documents

Commercial DNA tests and police investigations: a broad bioethical perspective

Challenges in using genetic genealogy in forensics

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