Qualitative assessment of patients’ attitudes and expectations toward BCIs and implications for future technology development

Recruitment and Sample

Potential interviewees were recruited between April and July 2013 via flyers sent out to various self-help groups and clinics for persons with bodily disabilities and muscle disease. These networks cover a broad regional spectrum from Central-West to North–West Germany. Self-recruitment (as opposed to recruitment through doctors and clinics) was encouraged to avoid biased positions, to include patients not yet enrolled in clinical BCI trials. We hoped to obtain more general attitudes toward this innovation from such patients.

We included four patient types as interviewees who are considered potential future users of motor and communication readout-BCIs, namely patients with ALS, muscle atrophy, para- and tetraplegia. We introduced readout-BCIs for restoring or controlling motor function to them by providing a short video sequence (see below). We chose motor readout-BCI because it is a major field of research.

We conducted open question interviews with ten people for this study. All interviews were conducted in German language at the interviewee’s private home and lasted between 0.5 and 2.5 h. The gender-balanced sample covers a spectrum of different disabilities (see Table ​Table11). One out of the 10 interviewees was a female caregiver who intensively cared for her recently deceased father who had ALS. She herself was not considered as ALS patient, but argued very empathically and in a way as she was at risk for the disease and was therefore included into our sample. All interviewees lived in their own house or flat with long-term assistance from one or more family members or a professional caregiver (which is covered by health care provisions in Germany).

Proponents: “Increasing Personal Privacy and Reducing Dependence”

The six patients in favor of BCI research had spinal muscular atrophy, ALS, or tetraplegia. They particularly expressed their hope of gaining more self-control and independence in basic, everyday activities. This is considered the ‘right to privacy’ in philosophy and law. It includes the right to be alone, without any unwanted intrusion and the right to experience solitude. In particular, intimacy and activities related to personal hygiene were frequently mentioned as part of personal privacy. As a consequence, BCIs are expected to reduce the dependence on and need for human assistance, which was a requirement in daily routine for all interviewees. Moreover, both the interviewed ALS-patients as well as the related caregiver of the ALS-patient stressed the need for a communication BCI. Improving or ensuring communication was seen as a fundamental issue, because the serious impairment of communication abilities was interpreted as a reason for personal suffering. Restoring or enabling communication for those affected by ALS was regarded as important for increasing quality of life, for avoiding social isolation or even for maintaining the will to live. Apart from the generally positive attitudes, some interviewees critically assessed the medical risks linked to the necessary surgery for invasive BCIs. Especially anesthesia is regarded as a high medical risk factor in surgeries performed in patients with ALS or muscle atrophy related to neuro-inflammatory processes and should be avoided. Therefore, non-invasive solutions or low doses of anesthesia are preferred.

Skeptics: “Insufficient aims, Stigmatization, and Data Insecurity”

Patients whose disability did not require permanent personal assistance tended to make negative assessments. Critique focused on practical technical aspects. Concerns for invasive BCIs included the adequate relation of personal benefits on the one hand and medical risks and limits to data protection on the other hand. One interviewee with paraplegia criticized the hype concerning the success of Jan Scheuermann and questioned whether eating independently actually is of interest for such a person. Instead, moving and lifting one’s own body independently was regarded as more important in the skeptical group. One patient expressed concern about data security (low technical protection or leaking of personal data) and the risks of misuse (e.g., illegitimate access and instrumentalisation of personal data on behalf of third party interests). The interviewee asserted that BCIs could be used to monitor patients’ activities or even thoughts. These concerns were embedded within the rather general opinion that data insecurity and misuse should be seen as an increasing public phenomenon: too many personal data are collected by the state, and the use of surveillance technology in public impairs citizens’ rights to information privacy. Another patient expressed concern that BCI technology could lead to neglecting existing mobility and demotivating people to do regularly exercise to keep one’s muscles active. This concern was clearly related to the video input as BCIs for rehabilitation purposes were previously neither discussed nor known by this patient. Finally, a purely ‘medical view’ on disability was criticized. Such a view, as the skeptic said, neglects the social factors regarding dependence and stigmatization. This is the case when BCI approaches are contextualized as a cost reduction of care work or as to increase mobility by ‘walking’ because ramps are still missing in many buildings.

Ambivalent Attitudes: “Trade-off Between the Caregiver and Technological Dependence”

Those who argued in support of BCI technology were not without criticism. Most of them expressed the fear that BCIs are hyped in the media but are still not in sight as a real future option. In addition, patients feared that complex BCIs would not lead to more self-determination, independence and privacy but could create new dependencies (e.g., from technical service). Furthermore, the wish for a realistic depiction of BCIs for patients was stressed, as it was regarded as unrealistic to compare seriously disabled persons with able-bodied persons through the application of BCIs. In reference to the case of Jan Scheuermann, one interviewed person asked ironically how the chocolate came so close that she could take a bite. Only one patient problematized that BCIs might transcend our self-understanding as human beings by crossing humans with machines. He referred to the metaphor of “Frankenstein’s monster” to express his personal ambivalence but did not weigh such a ‘feeling’ as sufficiently important to reject technological innovations.

Factors Influencing Attitudes

The patients’ experience with human as well as technical assistance was important for understanding their respective positions. Experience with human assistance was vital for understanding positive attitudes and concrete hopes attached to the functions of potential BCIs for daily life. Experience with technical assistance was essential for understanding concrete concerns about functionality and doubts about clinical practicability.

Changes of Personality or Individual Identity

As the brain is seen as a major bodily correlate for our cognitive and emotional self-relationship, changes of the brain might lead to changes of a person’s identity. Some (e.g., Clark, 2004) use the metaphor ‘cyborg’ to express the transhumanist potential they expect from this technology. Other philosophers have used references to “cyborgs” to express concerns (e.g., Warwick, 2003; Rose, 2005; Wolpe, 2007) based on the idea that close interaction between the brain and a machine might impoverish our sensibility to differentiate between internal and external intentions and thus, our bodily awareness or consciousness can become prone to manipulation by external machines (Blanke and Aspell, 2009). Therefore, the neuro-invasive experiments by Delgado and others are considered a proof of concept for externally induced changes of one’s personal identity. However, the underlying assumption is here a Cartesian division of body and mind because the technical effect is imagined to be perceived as something ‘external’ intruding or an experience of estrangement. More holistic or dynamic approaches to the body and human identity refer to empirical evidence that external tools (BCIs, C-Leg prostheses, sports equipment etc.) are directly integrated into our body scheme. This can be seen as part of a successful body-environment interaction (Reichert et al., 2013) and therefore challenges the Cartesian view. The representation of the bodily self does not necessarily end at our body surface/outer skin but can or even must be extended to external tools (Nicolelis and Lebedev, 2009; Hildt, 2010). It is important to note that such a body conception is shared by modern neuroscience and postmodern ethics (Schicktanz, 2007). Some concerns toward BCIs derive from the assumption that a body is ‘natural’ and that an ‘unnatural’ technical system invades the human body. However, this view is inconsistent, as we accept many other forms of technological changes to the human body in the form of medical treatments (Anderson, 2008). According to Anderson only medical risks associated to BCIs or neuro-implants are relevant.

Uncertainty About Risks

Several authors have pointed out that benefits and risks of BCIs are still uncertain for various reasons – the novelty of the approaches, a lack of comprehensive understanding of how the complex human brain works, and current challenges in data processing and control (Nuffield Council on Bioethics, 2013). The special status of the brain provides a reason to exercise beneficence by intervening when injury or illness causes brain disorders, and also a reason for caution when we are uncertain about the effects (Rose, 2005; Nuffield Council on Bioethics, 2013; Grübler et al., 2014). A radical ‘precautionary’ approach (Holm and Harris, 1999) might conclude that such uncertainty does not justify any research on BCIs. However, the implementation of such a principle necessitates caution, too, as it stifles any kind of research or discovery. Alternatively, a more procedural approach would allow for substantially distinguishing between invasive and non-invasive BCIs, as the former induce more medical risks than the latter. Moreover, we can work with different stages of careful risk assessment, as it is common for other clinical innovations (Clausen, 2009). This requires special scrutiny when informing patients and relatives about clinical trials. Overoptimistic promises or manipulation must be avoided during decision-making and consent processes (Hildt, 2010; Nuffield Council on Bioethics, 2013). This is a basic condition for any kind of biomedical innovation or research and per se is not specific for BCIs. In the case of BCIs, informed consent can be seen as a particular challenge for patients with both substantial impairment of mobility and verbal communication (Schneider et al., 2012), e.g., when involving patients with Locked-in-Syndrome. An argument for research on BCIs is that any opportunity should be taken enabling communication with such patients, while skeptics warn about wrong interpretations of a presumed will (Nijboer et al., 2009; Kyselo, 2013; Nijboer et al., 2013). However, considering most BCI technologies, the majority of the potential group of patients (e.g., with spinal cord injuries) are cognitively competent and are – in one way or another – able to communicate their will unambiguously. This is important to note, as readout-BCIs may in this context differ from other neuro-technologies such as neural tissue transplantations or brain stimulation for demented patients.

Support for Family Members

A third ethically relevant argument in favor of BCIs for neuro-prosthesis is that it will particularly provide support for family members by reducing the burden of care (e.g., Nijboer et al., 2013). As BCIs in the context of neuro-prosthesis aims at gaining more independence for basic activities of patients such as moving, drinking, and eating, this can also improve the caregiver’s quality of life. While this is not wrong and a necessary part of clinical evaluation (Vaughan et al., 2012, p. 329f), overstressing such an argument can become problematic because it stigmatizes immobile patients as a burden for the family or society. It also overlooks that individual benefits for patients have ethical priority over such social considerations (UNESCO, 2005). Furthermore, it rather highlights how patients with impaired mobility still suffer from social and public stigmatization.

Empowerment

Both experts and patients consider autonomy and empowerment as crucial arguments. Consensually, communicative BCIs are seen as very important empowerment to allow patients to express their own wishes and needs. However, a closer comparative look reveals that their specific arguments might have different implications for BCI research. Experts have the tendency to believe that patients become autonomous by ‘walking again’ or by executing basic activities such as self-feeding. In addition, BCIs are seen as empowering for caregivers as they provides relief for their care work. Patients revealed a different perspective; they see BCIs as empowering for particular intimate activities and for allowing for more privacy in situations where dependence on human assistants is perceived as intrusive. In our problem-centered interviews patients put high priority on restoring bodily functions or daily activities related to body hygiene and intimacy. Our results are in accordance with previous studies (Hart et al., 1996; French et al., 2010; Hochberg and Anderson, 2012). These studies employed a structured survey with pre-formulated choices to assess spinal cord patients’ expectations toward BCIs. The authors found that these patients prioritize the restoration of bladder and bowel functions and sexual functions before, for example, regaining the ability to walk. The patients’ assessments indicate that autonomy and empowerment should be discussed from a more contextualized, disease-related perspective than from a theoretical, abstract one.

The topic of empowerment should also be regarded in its relation to the perception of disability. While the so called ‘deficit model’ (see above) is currently being heavily attacked by disability studies and accused of being morally loaded and promoting negative stereotypes (Pfeiffer, 2002), practical considerations do not neglect that persons having ALS, para- or tetraplegia need to be empowered in various forms to decide practically and politically about their own life. Thus, research on neuro-prosthesis for disabled persons should avoid hidden moral assumptions about the ‘deficits’ and rather focus on the interests of the affected persons themselves.

Changes in Identity

Experts, especially from the field of philosophy, intensively discuss the issue of possible BCI-induced changes in identity. Aspects of consistency, stability, and authenticity of personal identity are indeed challenging philosophical questions. However, the current debate does not sufficiently differentiate between readout- and stimulation-BCIs as well as irreversible neuro-technologies. In contrast to experts, patients rarely problematize such issues when confronted with the BCI approach. This can be explained by the fact that most chronically ill patients have experienced radical changes of their identity and self-conception through their disease and disability (Strauss and Glaser, 1975; Kleinmann, 1988). A chronic disease can be understood from a sociological and psychological point as (painful) experience of identity transformation. In line with this view, the development of coping strategies in crises can be detected, as the patients continuously work on his/her identity. These changes often include the acceptance of dependence on technical or medical means to master everyday-life.

Enhancement

A similar discrepancy between an expert debate driven by theory and an everyday-life perspective of patients can be observed with the issue of enhancement. In concrete applications it can be hard to decide whether an application is considered enhancement or therapy. For example, under the deficit hypothesis restoration of speech comprehension in CI-patients is considered therapy. If one does not consider deafness a deficit, CI would be considered as enhancement. This example shows that in concrete application situations the distinction depends on the assessment of the initial situation. If enhancement is understood broadly and relatively, it can be equated with learning (via or with technological support including book print or computers). Hence, it does not seem to be something new or problematic, but is seen as an integral part of human cultural evolution. However, if enhancement is understood narrowly as a technology that substantially changes the very bodily condition of a being, we might consider this intervention significant (e.g., creating human beings from their very existence with new genes for a different brain development). Also irreversibility seems to be important – if changes do not allow individuals to withdraw or change such a process, as we can do with other types of cognitive learning, a morally problematic intervention is implied. But the BCI technology we discussed above, does not fall into this first or second category. In this sense we are in line with Saniotis et al. (2014) who state that “while neuroscience research is advancing BMI therapeutic capabilities, there is yet no existing brain–machine interface based on exchange of electrical (electromagnetic) signals that would improve human cognitive abilities above and beyond what a natural brain can do.” Hence, it is reasonable that the interviewees did not refer to this philosophical debate.

We like to thank all interviewees for sharing their perspective. We thank also Fanny Quandt, Hamburg for helpful comments and Julia Perry, Göttingen for language editing. JR received support from the Land Niedersachsen grant “Interdisciplinary Research Center on Critical Systems Engineering for Socio-Technical Systems.”