Rethinking Therapeutic Misconception in Biobanking – Ambivalence Between Research and Treatment

Tupasela, Aaro; Snell, Karoliina; Cañada, José A.

doi:10.23987/sts.56999

Cited by 8 publications

(5 citation statements)

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“…In interventional research, the existence of a ‘therapeutic misconception’ (i.e., participants believing that the research will clinically benefit them) may limit patients’ ability to give valid consent [ 72 ]. In biobanking and genomic data studies, however, the boundary between research and care is known to become increasingly blurred due to the disclosure of individual genetic findings, and this risk of therapeutic misconception is therefore less relevant [ 73 ]. In contrast, our study provides evidence of a therapeutic non-conception among biobank participants: a term coined by Tupasela & Liede [ 74 ] meaning that “people are not aware of how their samples and information are being used” (p. 269) while lack of awareness and up-to-date preferences regarding DNA analysis may have implications for participants’ health.…”

Section: Discussionmentioning

confidence: 99%

Health data research on sudden cardiac arrest: perspectives of survivors and their next-of-kin

et al. 2021

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Background Consent for data research in acute and critical care is complex as patients become at least temporarily incapacitated or die. Existing guidelines and regulations in the European Union are of limited help and there is a lack of literature about the use of data from this vulnerable group. To aid the creation of a patient-centred framework for responsible data research in the acute setting, we explored views of patients and next-of-kin about the collection, storage, sharing and use of genetic and health-related data for observational research. Methods We conducted qualitative interviews (n = 19) with Dutch sudden cardiac arrest survivors who donated clinical and socio-economic data and genetic samples to research. We also interviewed their next-of-kin. Topics were informed by ethics literature and we used scenario-sketches to aid discussion of complex issues. Results Sudden cardiac arrest survivors displayed limited awareness of their involvement in health data research and of the content of their given consent. We found that preferences regarding disclosure of clinically actionable genetic findings could change over time. When data collection and use were limited to the medical realm, patients trusted researchers to handle data responsibly without concern for privacy or other risks. There was no consensus as to whether deferred consent should be explicitly asked from survivors. If consent is asked, this would ideally be done a few months after the event when cognitive capacities have been regained. Views were divided about the need to obtain proxy consent for research with deceased patients’ data. However, there was general support for the disclosure of potentially relevant post-mortem genetic findings to relatives. Conclusions Sudden cardiac arrest patients’ donation of data for research was grounded in trust in medicine overall, blurring the boundary between research and care. Our findings also highlight questions about the acceptability of a one-time consent and about responsibilities of patients, researchers and ethics committees. Finally, further normative investigation is needed regarding the (continued) use of participants’ data after death, which is of particular importance in this setting. Our findings are thought to be of relevance for other acute and life-threatening illnesses as well.

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Section: Discussionmentioning

confidence: 99%

Health data research on sudden cardiac arrest: perspectives of survivors and their next-of-kin

et al. 2021

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“…Along these lines, Vertesi (2014) describes how connections between multiple, largely incompatible scientific infrastructures require the (temporary) stitching together of the material 'seams' between different systems. Research on the growing importance of exchange and circulation of materials and data in the life sciences has also shown how standardization and coordination of data formats is not only a matter of building technical infrastructure, but also of shared social relations across research sites (Leonelli, 2016;Tupasela, 2010). These examples show how the making and interconnecting of research infrastructures includes the creation of new socio-material relations.…”

Section: Conceptualizing European Research Infrastructures As Relatio...mentioning

confidence: 99%

Infrastructuring European scientific integration: Heterogeneous meanings of the European biobanking infrastructure BBMRI–ERIC

Aarden

2023

Soc Stud Sci

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While transnational research infrastructure projects long preceded the formal integration process that created the European Union, their advancement is an increasingly central part of EU research policy and of European integration in general. This paper analyses the Biobanking and Biomolecular Resources Research Infrastructure–European Research Infrastructure Consortium (BBMRI–ERIC) as a recent example of institutionalized scientific collaboration in Europe that has formally been established as part of EU science policy. BBMRI–ERIC, a network of European biobanks, is expected to contribute to both European science and European integration. Yet its achievements in these domains are interpreted differently by various actors involved. This paper draws on STS conceptualizations of infrastructures as relational, experimental, and promissory assemblages. These support the formulation of a working definition of research infrastructures that in turn helps to explore the heterogeneous meanings attributed to BBMRI–ERIC. The paper describes the creation of this distributed European research infrastructure, and divergent understandings of what it means for BBMRI–ERIC to be distributed, to be European and to be a research infrastructure. This analysis demonstrates how building a research infrastructure is also an effort to define what it means to be European—a process in which what is European about science and what science can do for Europe is continuously (re-)imagined, contested and negotiated.

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“…Organoid biobanking aimed at the treatment of patients further blurs the distinction between clinical care and tissue research [53] . It is precisely the convergence of these two domains that makes clinical biobanking so promising for precision medicine [5] .…”

Section: Navigating the Blurring Distinction Between Clinical Care And Researchmentioning

confidence: 99%

Organoids for personalized treatment of Cystic Fibrosis: Professional perspectives on the ethics and governance of organoid biobanking

Lensink

Boers

Jongsma

et al. 2021

Journal of Cystic Fibrosis

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Background: Organoid technology is emerging rapidly as a valuable tool for precision medicine, particularly in the field of Cystic Fibrosis (CF). However, biobank storage and use of patient-derived organoids raises specific ethical and practical challenges that demand sound governance. We examined the perspectives of professionals affiliated with CF or organoids on the ethical aspects of organoid biobanking for CF precision medicine. By conducting this study parallel to the process of innovation and development of organoid biobanking, its findings are valuable for the design of responsible governance frameworks.Methods: To identify relevant themes and attitudes we conducted 21 semi-structured qualitative interviews with professionals in the field of organoid technology, biobanking, or CF research and care. Results:We identified three key challenges, as well as the suggestions of professionals on how to address them: (1) The challenges associated with commercial involvement, trust, and ownership, (2) Navigating the blurring boundary between research and clinical care, (3) Appropriate approaches to the informed consent procedure. Conclusion:Sound governance of organoid biobanks aimed at precision medicine requires coming to terms with the fact that its stakeholders no longer belong to separate domains. Responsible governance should be aimed at finding a sound, context-sensitive balance between integration of ongoing co-operation and mutual consideration of interests, and maintaining a feasible and sustainable research climate.

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Rethinking Therapeutic Misconception in Biobanking – Ambivalence Between Research and Treatment

Cited by 8 publications

References 47 publications

Health data research on sudden cardiac arrest: perspectives of survivors and their next-of-kin

Health data research on sudden cardiac arrest: perspectives of survivors and their next-of-kin

Infrastructuring European scientific integration: Heterogeneous meanings of the European biobanking infrastructure BBMRI–ERIC

Organoids for personalized treatment of Cystic Fibrosis: Professional perspectives on the ethics and governance of organoid biobanking

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