Autonomy and Fear of Synthetic Biology: How Can Patients’ Autonomy Be Enhanced in the Field of Synthetic Biology? A Qualitative Study with Stable Patients

Rakic, Milenko; Wienand, Isabelle; Shaw, David; Nast, Rebecca; Elger, Bernice Simone

doi:10.1007/s11948-016-9786-x

Cited by 7 publications

(7 citation statements)

References 27 publications

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“…We applied a bottom-up, rather than a top-down approach: we did not use an existing theoretical framework of hope while reading the interviews. Hope emerged as one of the themes from the interview material (see Rakic et al 2016).…”

Section: Methodological Remarksmentioning

confidence: 99%

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The Beneficence of Hope: Findings from a Qualitative Study with Gout and Diabetes Patients

et al. 2018

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This paper explores the importance of hope as a determining factor for patients to participate in first-in-human trials for synthetic biology therapies. This paper focuses on different aspects of hope in the context of human health and well-being and explores the varieties of hope expressed by patients. The research findings are based on interview data collected from stable gout and diabetes patients. Three concepts of hope have emerged from the interviews: hope as certainty (H1); hope as reflective uncertainty (H2); hope as self-therapy (H3). The purpose of the paper is twofold. First, it aims to underline the significance of hope in patients' medical decision-making, as well as the beneficence of hope for patients' well-being, and for progress in research. Second, it shows how philosophical investigations-in particular Descartes-explore the phenomenon of hope and provide medical empirical research with profitable insights and tools.

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Section: Methodological Remarksmentioning

confidence: 99%

“…As such, hope should be promoted for the sake of both patients' well-being and clinical research. Details of the methods are described elsewhere (Rakic et al 2016).…”

Section: Methodological Remarksmentioning

confidence: 99%

The Beneficence of Hope: Findings from a Qualitative Study with Gout and Diabetes Patients

et al. 2018

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“…The interview guide consisted of 10 open questions, each with several subquestions prompting participants on details, for example, current health status, knowledge regarding technology, and opinions on research participation. During the semistructured interview, the researcher provided additional information about a novel intervention by reading a case study (Rakic et al, 2017) as well as showing information graphics on the intervention and on clinical trials in general. The hypothetical example presented during the interview depicted the implantation of autologous and modified cells (removed from a person and later implanted into that same person).…”

Section: Study Toolmentioning

confidence: 99%

Trust trumps comprehension, visceral factors trump all: A psychological cascade constraining informed consent to clinical trials: A qualitative study with stable patients

et al. 2020

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This paper addresses psychological factors that might interfere with informed consent on the part of stable patients as potential early-phase clinical trial participants. Thirty-six semistructured interviews with patients who had either diabetes or gout were conducted. We investigated stable patients’ attitudes towards participating in a fictitious first-in-human trial of a novel intervention. We focused on an in-depth analysis of those statements and explanations that indicated the existence of psychological factors impairing decision-making capacity. Three main themes emerged: insufficient comprehension of the inherent logic of clinical trials (actual comprehension), the recourse to trust over comprehension (prioritization of trust), and visceral factors that override deliberative process (visceral factors). Overall, our results indicate a limited psychological capacity on the part of stable patients to meet the requirements of informed consent as set by Declaration of Helsinki. A redesigned informed consent procedure should take account of these psychological realities.

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“…At the same time, it is of utmost importance to try to find a-shifting and negotiable-balance of both the persistent need for scientific institutions and gatekeepers, expert knowledge, and space for risky and ambitious scientific endeavors on the one hand, as well as allowing more active participation and reducing extant barriers of power on the other. [107][108][109][110][111] Furthermore, a study conducted with US citizens reveals enthusiasm for synthetic biology applications if they aim at finding solutions for societal, medical, and sustainability needs. [99] At this juncture, the important point about openness is that different interests are handled with transparency and are given equal weight when they concern the same regulatory point.…”

Section: In Science We Trust? Public Perceptions Of Sbmentioning

confidence: 99%

“…[106] Supportive attitudes have mainly been expressed concerning medical applications. [107][108][109][110][111] Furthermore, a study conducted with US citizens reveals enthusiasm for synthetic biology applications if they aim at finding solutions for societal, medical, and sustainability needs. Conversely, emerging biotechnologies are perceived as causes for potential concern if this research is done without investigations into their potential risks and long-term implications.…”

Section: In Science We Trust? Public Perceptions Of Sbmentioning

confidence: 99%

(Re‐)Designing Nature? An Overview and Outlook on the Ethical and Societal Challenges in Synthetic Biology

Braun

Fernau

2019

Adv. Biosys.

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to provide an initial systematization of the ethical and socio-scientific debate on SB by structuring and categorizing issues that have been widely discussed and debated in recent years. The investigation included international ethical and societal research on SB, covering the period from January 2010 to December 2017. Even though we are aware that there have been several developments before it was referred to as SB, [6] this sample period was selected as the experiments of Craig Venter and his team in the year 2010 marked the birth of broader public and scientific attention to SB, as well as the rise and further establishment of SB as a distinct research discipline.We predefined five main fields of ethical research in order to map the scope of the respective debates. These fields were based on theoretical presuppositions informed by our preliminary theoretical and empirical research and the resulting experiences within the field of ethical and societal challenges of SB. The five fields are: 1) the definition and scope of possible applications; 2) questions of biosafety and -security; 3) the impact of SB on taken-for-granted cultural perceptions and values; 4) SB as a new mode of public participation in science; 5) issues of sustainable governance and Responsible Research and Innovation (RRI). With these five fields in mind, we searched for relevant articles on Scopus and PubMed. These are two of the largest international research databases, which cover a broad spectrum of ethical and socio-scientific work within the context of biotechnologies. The selected search term was "synthetic biology" in combination with several distinctive codes, which can be assigned to the aforementioned predefined main fields of ethical research ( Table 1).In general, our literature analysis has several methodological limitations. As it is not a comprehensive systematic literature review, it does not provide a broad set of quantitative data scrutinizing all debates, issues and questions on the ethical and societal challenges in SB. Nevertheless, our analysis provides a structured overview on and an initial systematization of the most relevant topics within the discussion on SB in recent years. Additionally, this article aims to provide an analysis and discussion of the current state of play of ethical and societal issues in SB.The first section is concerned with the question of a possible definition of SB and the issue of how we could describe and analyze its technological progress with regard to ethical and societal challenges. As one frequent debate of the last few This structured literature analysis aims to map the current, emerging, and predicted future of synthetic biology (SB) by putting the focus on the implied conceptual, societal, and ethical challenges. The central objective of the analysis is to provide an initial systematization of the ethical and socio-scientific debate on SB by structuring and categorizing widely discussed issues within the debate in recent years. Starting with the quest for possible definitions, issues ...

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Autonomy and Fear of Synthetic Biology: How Can Patients’ Autonomy Be Enhanced in the Field of Synthetic Biology? A Qualitative Study with Stable Patients

Cited by 7 publications

References 27 publications

The Beneficence of Hope: Findings from a Qualitative Study with Gout and Diabetes Patients

The Beneficence of Hope: Findings from a Qualitative Study with Gout and Diabetes Patients

Trust trumps comprehension, visceral factors trump all: A psychological cascade constraining informed consent to clinical trials: A qualitative study with stable patients

(Re‐)Designing Nature? An Overview and Outlook on the Ethical and Societal Challenges in Synthetic Biology

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