Accessing medical biobanks to solve crimes: ethical considerations

Groot, Nina F de; Beers, B.C. van; Decock, Lieven; Meynen, Gerben

doi:10.1136/medethics-2020-106133

Cited by 4 publications

(20 citation statements)

References 38 publications

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“…This approach might be relevant to genetic data in general. For example, forensic use of medical biobanks involves multiple ethical issues that also play on the societal level (De Groot et al, 2020). Many other debates in genetics could benefit from this societal approach to privacy as well; as the interconnectedness of this data is evident, it is becoming increasingly clear that a too individualistic approach has important limitations (De Groot, 2023; Widdows, 2007).…”

Section: Discussionmentioning

confidence: 99%

Commercial genetic information and criminal investigations: The case for social privacy

de Groot

2023

Big Data & Society

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Taking a DNA test with a commercial company is an increasingly popular enterprise, with tens of millions of consumers worldwide. In recent years, these genetic databases have also been used for so-called investigative genetic genealogy (IGG): uploading a crime scene DNA sample in these databases to find a distant relative of the unknown suspect. This forensic use of genetic consumer information has already helped solve many crimes. The debate on IGG tends to focus on individual rights and values, such as individual consent, individual control over information, and – perhaps most prominently – individual privacy. In this paper, I propose to approach IGG through the lens of privacy's social value, in contrast to merely its individual value. First, I discuss the conceptualization of privacy as a social value. Next, I explore several issues of IGG that privacy's social value allows consideration for: the informational and decisional interconnectedness, the risk of a tyranny of the minority, the involvement of multiple contexts, and the relationship between citizens and state. I conclude that this approach offers a fruitful perspective to evaluate the ethical and social desirability of IGG, evading the simplified dichotomy between individual privacy versus the security of society, in which the former will almost automatically lose. A focus on privacy's social value recognizes the effects for society on both sides of the balance. It brings into the light fundamental ethical, social, and political concerns of IGG, that extend beyond individual data control or consent.

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Section: Discussionmentioning

confidence: 99%

Commercial genetic information and criminal investigations: The case for social privacy

de Groot

2023

Big Data & Society

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“…DNA profiles can be obtained from samples stored in biobanks and, in turn, can be used in criminal investigations by comparing them with DNA profiles obtained from a crime scene [30]. In the article published in 2020 by de Groot et al [31], the authors point out that over the years, the forensic use of medical biobanks has occurred several times, especially in high-profile cases. From the most famous arrest in 2018, after 40 years of the "Golden State Killer" [31], to other cases cited by Bexelius et al [29].…”

Section: Potential Use Of Biobanks For Forensic and Research Purposesmentioning

confidence: 99%

“…In the article published in 2020 by de Groot et al [31], the authors point out that over the years, the forensic use of medical biobanks has occurred several times, especially in high-profile cases. From the most famous arrest in 2018, after 40 years of the "Golden State Killer" [31], to other cases cited by Bexelius et al [29]. For example, authors reported how in 2003, the identity of the killer of Swedish Foreign Minister Anna Lindh was ascertained thanks to a medical biobank containing biological samples from all newborns dating back to 1975.…”

Section: Potential Use Of Biobanks For Forensic and Research Purposesmentioning

confidence: 99%

Biobanks: Archives or Resources? Their Secondary Use for Forensic Purposes—A Systematic Review

Sguazzi,

Fasani,

Renò

et al. 2024

Forensic Sciences

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Since the biobanks’ inception in 1980, millions of human biological samples have been stored worldwide for medical research or treatment purposes. Today the secondary use of biobanks plays an increasingly important role in research projects because it allows large-scale research starting from professional collections of biospecimens and related clinical data. It would be limiting, in the “-omics” era, to not consider the enormous potential value to law enforcement of these biospecimens, where the availability of high-performance techniques makes it possible to obtain a large amount of data, even within a single session. Therefore, the quality of the sample, in addition to the associated clinical information, becomes of crucial importance to derive scientifically valid information, including for forensic research purposes. Proposing the introduction of the concept of “solidarity”, traditionally applied only to medical and research biobanks, led to public commitment to forensic medicine. Granting the forensic researcher this possibility certainly raises some questions regarding regulatory and ethical aspects of consent, privacy, confidentiality, transparency, and participant/donor trust. Since the debate has not stopped since the origin of biobanks, this review aims to explore the state of the art relating to the use of human biological material in medical biobanks for biomedical and forensic research.

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“…In the rare cases that law enforcement attempted to obtain DNA from biological materials kept within a medical setting, this has been declined by court rulings multiple times. 52 A third concern regards the possibility of change: even if DTC companies have accurate and well-informed opt-in policies now, it could well be that they will change these in the future. There is often a possibility of unilateral change of terms by DTC companies without any notification.…”

Section: Feature Articlementioning

confidence: 99%

“…In the rare cases that law enforcement attempted to obtain DNA from biological materials kept within a medical setting, this has been declined by court rulings multiple times. 52 …”

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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Accessing medical biobanks to solve crimes: ethical considerations

Cited by 4 publications

References 38 publications

Commercial genetic information and criminal investigations: The case for social privacy

Commercial genetic information and criminal investigations: The case for social privacy

Biobanks: Archives or Resources? Their Secondary Use for Forensic Purposes—A Systematic Review

Commercial DNA tests and police investigations: a broad bioethical perspective

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