Legal Perspectives on Post-mortem Use of Biomaterial and Data for Research: A Focus on the German Situation

Hänold, Stefanie; Forgó, Nikolaus; Kobeissi, Dania; Nwankwo, Iheanyi

doi:10.1163/15718093-12341415

Cited by 3 publications

(10 citation statements)

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“…Tassé [19], Dhai, and Mahomed [9] stated that, given the recent growth in longitudinal population studies and long-term biobanks, the death of research participants is increasingly relevant. Recalling further is conducted not to underestimate this implication since genetic research can not only impact the participants but also their biological family members [19,45]. Samples and data that have been collected prior to the death of the participant with valid consent are also raising ethical and legal issues [19].…”

Section: Post-mortem Use Of Biomaterialsmentioning

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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Section: Post-mortem Use Of Biomaterialsmentioning

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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“…The scope of this review is limited to the post-mortem research with genetic (or broader: genomic) and other health-related data (contained in databases or biobanks) obtained during the lifetime of a research participant. We chose this focus because procurement of samples after death raises a qualitatively different set of ethical questions (e.g., concerns about body and burial), and because of the lack of guidance compared with posthumous collection [4,30].…”

Section: Aims and Scopementioning

confidence: 99%

“…Moreover, sharing of genetic findings with relatives is generally seen as a benefit of research participation by both living participants [54] and parents of deceased participants [36], and participants may expect that clinically actionable results are shared with relatives after their death, which is not necessarily the case. Informing prospective participants about both post-mortem research uses of data and the disclosure of individual findings, if possible, would demonstrate that researchers take their responsibilities seriously, and knowing that participants have considered this issue whilst alive would remove some uncertainty when balancing interests after their death [30].…”

Section: Informing Participants About Post-mortem Uses Of Research Datamentioning

confidence: 99%

Stakeholders’ perspectives on the post-mortem use of genetic and health-related data for research: a systematic review

et al. 2019

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The majority of biobank policies and consent forms do not address post-mortem use of data for medical research, thus causing uncertainty after research participants' death. This systematic review identifies studies examining stakeholders' perspectives on this issue. We conducted a search in MEDLINE, CINAHL, EMBASE and Web of Science. Findings were categorised in two themes: (1) views on the use of data for medical research after participants' death, and (2) perspectives regarding the post-mortem return of individual genetic research results. An important subtheme was the appropriate authority and degree of control over posthumous use of data. The sixteen included studies all focused on genetic data and used quantitative and qualitative methods to survey perspectives of research participants, family members, researchers and Institutional Review Board members. Acceptability of post-mortem use of data for medical research was high among research participants and their relatives. Most stakeholders thought participants should be informed about post-mortem research uses during initial consent. Between lay persons and professionals, disagreement exists about whether relatives should receive actionable genetic findings, and whether the deceased's previous preferences can be overridden. We conclude that regulations and ethical guidance should leave room for post-mortem use of personal data for research, provided that informed consent procedures are transparent on this issue, including the return of individual research findings to relatives. Future research is needed to explore underlying causes for differences in views, as well as ethical and legal issues on the appropriate level of control by deceased research participants (while alive) and their relatives.

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“… 15 Some authors do not consider genetic samples to be data, as the data must first be extracted, whereas others believe that since the data is carried within the material, data protection rules should apply (Hänold et al, 2017 ). …”

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confidence: 99%

“…The commercial interests associated with posthumous (health) data research are outside the scope of this article, but the concept of a 'Digital Afterlife Industry' (DAI) has been introduced and elaborated in a paper byÖhman & Floridi (2017). 15 Some authors do not consider genetic samples to be data, as the data must first be extracted, whereas others believe that since the data is carried within the material, data protection rules should apply(Hänold et al, 2017).13 Ian Urbina, "I Flirt and Tweet. Follow Me at #Socialbot", New York Times, August 10, 2013 [https:// www.…”

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confidence: 99%

Contextual Exceptionalism After Death: An Information Ethics Approach to Post-Mortem Privacy in Health Data Research

Bak

Willems

2022

Sci Eng Ethics

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In this article, we use the theory of Information Ethics to argue that deceased people have a prima facie moral right to privacy in the context of health data research, and that this should be reflected in regulation and guidelines. After death, people are no longer biological subjects but continue to exist as informational entities which can still be harmed/damaged. We find that while the instrumental value of recognising post-mortem privacy lies in the preservation of the social contract for health research, its intrinsic value is grounded in respect for the dignity of the post-mortem informational entity. However, existing guidance on post-mortem data protection is available only in the context of genetic studies. In comparing the characteristics of genetic data and other health-related data, we identify two features of DNA often given as arguments for this genetic exceptionalism: relationality and embodiment. We use these concepts to show that at the appropriate Level of Abstraction, there is no morally relevant distinction between posthumous genetic and other health data. Thus, genetic data should not automatically receive special moral status after death. Instead we make a plea for ‘contextual exceptionalism’. Our analysis concludes by reflecting on a real-world case and providing suggestions for contextual factors that researchers and oversight bodies should take into account when designing and evaluating research projects with health data from deceased subjects.

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Legal Perspectives on Post-mortem Use of Biomaterial and Data for Research: A Focus on the German Situation

Cited by 3 publications

References 0 publications

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

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

Stakeholders’ perspectives on the post-mortem use of genetic and health-related data for research: a systematic review

Contextual Exceptionalism After Death: An Information Ethics Approach to Post-Mortem Privacy in Health Data Research

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