The public you want, the public you get: Exploring the relationship between the public and science in the debate on xenotransplantation.

The debate that followed the first-in-human cardiac transplantation of a genetically modified pig organ emerged as a discussion of social justice when the patient's criminal record was revealed. This article aims to make sense of this debate by understanding the role of the 'public' today, particularly in relation to the governance of biotechnology. The relationship between the public and science is increasingly mediated through citizen participation. However, the public debate that unfolded on matters of social justice can be seen as an unmediated public discourse, which carries the risk of producing unpredictable outcomes. The content of the debate gains significance due to the functional differentiation of society. The medical subsystem does not consider the patient's history in terms of their involvement in the legal sphere, that is, their criminal record. Nevertheless, normative judgements are transferred across functional systems, allowing for the influence of public opinion and the potential for public scorn.

What does it take to consent to islet cell xenotransplantation?: Insights from an interview study with type 1 diabetes patients and review of the literature.

BACKGROUND: The transplantation of porcine islet cells provides a new potential therapy to treat patients with type 1 diabetes mellitus (T1DM). Compared to other biomedical technologies, xenotransplantation stands out in terms of its involvement of animals as graft sources, as well as the possible transmission of infectious diseases. As these aspects are especially relevant for potential xenotransplantation recipients, it is important to assess their opinion regarding this technology, in particular in terms of the requirements that should be met in the informed consent process for xenotransplantation. METHODS: We conducted qualitative interviews with seven T1DM patients to assess their information needs prior to xenotransplantation. Before the interview, the participants received a model informed consent form for a clinical trial with porcine islet cells transplantation. The interviews were transcribed and analysed using qualitative content analysis. RESULTS: In the interviews, we identified several requirements that are crucial for patients with T1DM in order to consider xenotransplantation as a potential treatment option: therapy-related requirements, professional care and supervision, successful behaviour and attitude management, improving quality of life, and managing control/self-determination challenges. Regarding the informed consent form, several of the participants' questions remained open and should be addressed in more detail. The interviewees stressed the importance of personal consultations. CONCLUSIONS: To become a sustainable therapeutic option, patients especially expected an improved diabetes control and a reduction of diabetes-related burdens. Health-related aspects prove to be pivotal for diabetic patients when considering porcine islet cell transplantation. The use of pigs as source for organ retrievals was not considered as problematic.

"Xenotransplantation challenges us as a society": What well-informed citizens think about xenotransplantation.

A citizen's conference on xenotransplantation delivers a cautious 'Yes, but…' endorsement. It also shows how additional knowledge and debate shifted peoples' opinion on this technology.

What is it like to use a BCI? - insights from an interview study with brain-computer interface users.

BACKGROUND: The neurotechnology behind brain-computer interfaces (BCIs) raises various ethical questions. The ethical literature has pinpointed several issues concerning safety, autonomy, responsibility and accountability, psychosocial identity, consent, privacy and data security. This study aims to assess BCI users' experiences, self-observations and attitudes in their own right and looks for social and ethical implications. METHODS: We conducted nine semi-structured interviews with BCI users, who used the technology for medical reasons. The transcribed interviews were analyzed according to the Grounded Theory coding method. RESULTS: BCI users perceive themselves as active operators of a technology that offers them social participation and impacts their self-definition. Each of these aspects bears its own opportunities and risks. BCIs can contribute to retaining or regaining human capabilities. At the same time, BCI use contains elements that challenge common experiences, for example when the technology is in conflict with the affective side of BCI users. The potential benefits of BCIs are regarded as outweighing the risks in that BCI use is considered to promote valuable qualities and capabilities. BCI users appreciate the opportunity to regain lost capabilities as well as to gain new ones. CONCLUSIONS: BCI users appreciate the technology for various reasons. The technology is highly appreciated in cases where it is beneficial in terms of agency, participation and self-definitions. Rather than questioning human nature, the technology can retain and restore characteristics and abilities which enrich our lives.

Using brain-computer interfaces: a scoping review of studies employing social research methods.

BACKGROUND: The rapid expansion of research on Brain-Computer Interfaces (BCIs) is not only due to the promising solutions offered for persons with physical impairments. There is also a heightened need for understanding BCIs due to the challenges regarding ethics presented by new technology, especially in its impact on the relationship between man and machine. Here we endeavor to present a scoping review of current studies in the field to gain insight into the complexity of BCI use. By examining studies related to BCIs that employ social research methods, we seek to demonstrate the multitude of approaches and concerns from various angles in considering the social and human impact of BCI technology. METHODS: For this scoping review of research on BCIs' social and ethical implications, we systematically analyzed six databases, encompassing the fields of medicine, psychology, and the social sciences, in order to identify empirical studies on BCIs. The search yielded 73 publications that employ quantitative, qualitative, or mixed methods. RESULTS: Of the 73 publications, 71 studies address the user perspective. Some studies extend to consideration of other BCI stakeholders such as medical technology experts, caregivers, or health care professionals. The majority of the studies employ quantitative methods. Recurring themes across the studies examined were general user opinion towards BCI, central technical or social issues reported, requests/demands made by users of the technology, the potential/future of BCIs, and ethical aspects of BCIs. CONCLUSIONS: Our findings indicate that while technical aspects of BCIs such as usability or feasibility are being studied extensively, comparatively little in-depth research has been done on the self-image and self-experience of the BCI user. In general there is also a lack of focus or examination of the caregiver's perspective.