Trading in Cold Blood?

Hoeyer, Klaus

doi:10.1007/978-3-540-78845-4_2

Cited by 8 publications

(9 citation statements)

References 67 publications

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“…7 Speaking about the consent issues in Biobanking, Hoeyer K. 2012 8 has reported that Biobanks usually collect sample and data for multiple future research and it is not feasible to obtain specific consent for any single research. It has been discussed that one-off consent or a broad consent for various research purposes may not suffice ethical and legal requirements.…”

Section: Discussionmentioning

confidence: 99%

The awareness and perception about the Ethical concerns related to the Biobanks among Medical and Dental practitioners- A questionnaire based study

Khan

Vaswani

et al. 2017

AABS

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Background:The term "Biobank" has been used in different ways but one way is to define it as "an organized collection of human biological material and associated information stored for one or more research purposes". By definition, "Biobank" is a long-term storage and conservation facility for biological specimens, to support future scientific investigation. The aim of this study is to assess the awareness and perception of Biobanks, their existence, aims and objectives and the ethical concerns related to them, among the clinicians pertaining to both medical and dental specialties.Methods: A questionnaire comprising of 31 questions of which few are purely awareness and rest are perception based is framed. The questions which were framed for the questionnaire, have few of them given direct responses as YES, NO, DON'T KNOW and the remaining of them have been graded into LIKERT'S SCALE, ranging from 1 to 5. Statistical analysis: After obtaining the response, the answers were plotted in MS-Excel sheet and analysed statistically for the Percentages, Frequencies, Chi-square and degree of Association (p>0.05= No Association) between the two fraternities responses by using SPSS 22.0 version software. The p value was set at 0.05Result: There was found a level of association between both the groups for certain sensitive questions relating to privacy of information and ownership claims. Conclusion:It can be concluded that the willingness to participate in sample donation, motivation for sample donation are in agreement with each other, which is worth being further investigated.

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Section: Discussionmentioning

confidence: 99%

The awareness and perception about the Ethical concerns related to the Biobanks among Medical and Dental practitioners- A questionnaire based study

Khan

Vaswani

et al. 2017

AABS

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“…Second, the combination of rapid biotechnological developments and the rise of precision medicine have led to an unprecedented economic interest in human biological material, resulting in strong profit-driven incentives for commercial entities to further push the use of tissue and data collections stored in biobanks [38,46,[62][63][64][65]. Crucially, biobanks themselves are often dependent on some form of profit-generation to be feasible; involvement of industry is thus an important factor for realizing the potential (clinical) benefits of research [66][67][68].…”

Section: The Ethical Challenges Of Contemporary Research Involving Hu...mentioning

confidence: 99%

“…Crucially, biobanks themselves are often dependent on some form of profit-generation to be feasible; involvement of industry is thus an important factor for realizing the potential (clinical) benefits of research [66][67][68]. At the same time, there is evidence that commercial interests may affect the availability of samples, such as via Material Transfer Agreements to restrict access [65]. Moreover, as the economic potential of human biological material and data increases, so does the incentive for tissue users to capitalize on this potential, which could put pressure on ethical conditions such as privacy or the right to withdraw [6,64,69,70].…”

Section: The Ethical Challenges Of Contemporary Research Involving Hu...mentioning

confidence: 99%

Better governance starts with better words: why responsible human tissue research demands a change of language

et al. 2022

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The rise of precision medicine has led to an unprecedented focus on human biological material in biomedical research. In addition, rapid advances in stem cell technology, regenerative medicine and synthetic biology are leading to more complex human tissue structures and new applications with tremendous potential for medicine. While promising, these developments also raise several ethical and practical challenges which have been the subject of extensive academic debate. These debates have led to increasing calls for longitudinal governance arrangements between tissue providers and biobanks that go beyond the initial moment of obtaining consent, such as closer involvement of tissue providers in what happens to their tissue, and more active participatory approaches to the governance of biobanks. However, in spite of these calls, such measures are being adopted slowly in practice, and there remains a strong tendency to focus on the consent procedure as the tool for addressing the ethical challenges of contemporary biobanking. In this paper, we argue that one of the barriers to this transition is the dominant language pervading the field of human tissue research, in which the provision of tissue is phrased as a ‘donation’ or ‘gift’, and tissue providers are referred to as ‘donors’. Because of the performative qualities of language, the effect of using ‘donation’ and ‘donor’ shapes a professional culture in which biobank participants are perceived as passive providers of tissue free from further considerations or entitlements. This hampers the kind of participatory approaches to governance that are deemed necessary to adequately address the ethical challenges currently faced in human tissue research. Rather than reinforcing this idea through language, we need to pave the way for the kind of participatory approaches to governance that are being extensively argued for by starting with the appropriate terminology.

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“…Prior work suggests that biobank participants need more than simply the initial one-directional communication during the consent procedure to call a biobank trustworthy [70] . Since biobanking takes place in a wider context of 'innovation politics', trustworthiness rather requires governance frameworks that facilitate a fair balance between market forces, academic incentives, and other interests [71] . This is particularly relevant in the context of complex living tissues such as organoids, which people ascribe different levels of moral value and ownership to [ 26 , 31 , 40 ].…”

Section: Close Commercial Involvement Trust and Balancing Interestsmentioning

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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Trading in Cold Blood?

Cited by 8 publications

References 67 publications

The awareness and perception about the Ethical concerns related to the Biobanks among Medical and Dental practitioners- A questionnaire based study

The awareness and perception about the Ethical concerns related to the Biobanks among Medical and Dental practitioners- A questionnaire based study

Better governance starts with better words: why responsible human tissue research demands a change of language

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

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