Robin Mackenzie

Challenges of ethical and legal responsibilities when technologies' uses and users change: social networking sites, decision-making capacity and dementia

Successful technologies’ ubiquity changes uses, users and ethicolegal responsibilities and duties of care. We focus on dementia to review critically ethicolegal implications of increasing use of social networking sites (SNS) by those with compromised decision-making capacity, assessing concerned parties’ responsibilities. Although SNS contracts assume ongoing decision-making capacity, many users’ may be compromised or declining. Resulting ethicolegal issues include capacity to give informed consent to contracts, protection of online privacy including sharing and controlling data, data leaks between different digital platforms, and management of digital identities and footprints. SNS uses in healthcare raise additional issues. Online materials acting as archives of ‘the self’ bolster present and future identities for users with compromised capacity. E-health involves actual and potential intersection of data gathered for the purpose of delivering health technological support with data used for social networking purposes. Ethicolegal guidance is limited on the implications of SNS usage in contexts where users have impaired/reduced capacity to understand and/or consent to sharing personal data about their health, medication or location. Vulnerable adults and family/carers face uncertainty in regard to consent, data protection, online identity and legal liabilities. Ethicolegal responsibilities and duties of care of technology providers, healthcare professionals, regulatory bodies and policymakers need clarification.

Including Emotionality in Tests of Competence: How Does Neurodiversity Affect Measures of Free Will and Agency in Medical Decision Making?

Medical decision making by patients is respected as a lawful exercise of free will and agency unless patients are found to lack “competence.” Yet measures of competence in medical decision making typically assess only cognitive abilities. Emotionality is involved in decision making and may affect how far patients’ decisions to accept or refuse medical treatment embody free will. Moreover, neurodivergence, or atypical neurological makeup, is often diagnosed as neurodegeneration, neurodysfunction, neural damage, or neural difference and frequently leads to difficulties in considering the emotional aspects of decisions that standard tests do not measure or disclose. Neurodiversity activists assert that their neural differences are not pathologies to be treated or cured but are alternative ways of being that should be accepted as neuroequal. Nevertheless, who may claim to be neurodiverse is uncertain. We focus on atypical emotionality to consider the limits of neurodiversity in relation to measures of competence, particularly in relation to end-of-life decision making.

Who Should Hold the Remote for the New Me? Cognitive, Affective, and Behavioral Side Effects of DBS and Authentic Choices Over Future Personalities

Neuromodulatory stimuli involved in deep brain stimulation (DBS) produce reversible effects, and may be turned on, turned up or down, or turned off. They afford unique opportunities to map connecti...

Don't Let Them Eat Cake! A View From Across the Pond

This commentary considers moral issues over fat bodies provoked by the paradoxes associated with the requirements of consumption placed upon neoliberal citizens, pleasure, and addiction. It draws upon critical and cultural theory and feminist theorizations of fat bodies to do so. Fat bodies today are pathologized as abnormal, despite the fact that statistics suggest that more than half the populations of wealthier countries are now overweight or obese. Yet measures of health and normality have not altered to accommodate these bodily changes. Instead, such tests may alter overnight in the other direction, as the body mass index (BMI) did, to stigmatise more of us as fat, with the implication that we are therefore unhealthy, irresponsible, morally reprehensible citizens (Mackenzie 2008b).

Transableism, disability and paternalism in public health ethics: taxonomies, identity disorders and persistent unexplained physical symptoms

Transableism is a term which refers to moving between states of being able and disabled by choice rather than by happenstance. Insofar as this may imply a choice to become dependent, claims upon the healthcare system are likely to result. In this piece we aim to explore some ethical and legal implications of such claims. In order to do so, we draw upon current debates over the place of autonomy, beneficence and paternalism in public health ethics, the taxonomy of disability and the status of persistent unexplained physical symptoms (henceforth, PUPS). We suggest that transableism represents a useful construct which may contribute towards resolution of ongoing difficulties within public health ethics and theories of disability. In addition, we believe that it holds promise for the understanding of a significant proportion of patients presenting PUPS. We focus upon identity disorders, particularly in relation to what is currently termed Body Integrity Identity Disorder (henceforth, BIID), where sufferers report a subjective conviction that one or more of their limbs are superfluous, requesting medical assistance to remove the offending limb(s), repair the results of attempts at their self-removal or to provide prostheses and other assistance after removal. We have considered BIID elsewhere in relation to consent, capacity and the doctor/patient relationship (Mackenzie and Cox, 2005). One of us has also explored how the definition of addiction as a chronic relapsing disease within public health governance enables cycles of transitions between the rigours of rational liberal citizenship and the shriven status of the sick (Mackenzie, 2006). Since a central aim in this piece is evaluate the place of transableism within public health ethics, we will begin by considering the latter as a discursive context for the arguments which follow.

Can clinicians and carers make valid decisions about others' decision‐making capacities unless tests of decision‐making competence and capacity include emotionality and neurodiversity?

Purpose – The purpose in writing this paper is to highlight the lack of knowledge of many who are involved in capacity assessments, especially non‐professionals such as carers of the learning disabled, and the view that current guidance for capacity assessments does not take into account issues of emotionality.Design/methodology/approach – The approach is to discuss current guidance and practice, and to offer academic criticism and explanation.Findings – The findings include the discovery that the Mental Capacity Act 2005 Code of Practice suggests that healthcare professionals and family/carers may undertake assessments of decision‐making capacity, yet the guidance it provides for their doing so overlooks salient issues. Many of those involved in the daily lives of those, who may lack decision‐making capacity (and thus be seen as legally incompetent) such as the learning disabled, demented, mentally ill and neurodiverse, must decide whether to respect their decisions as competent, or to disregard the deci...

Must Family/Carers Look after Strangers? Post-DBS Identity Changes and Related Conflicts Of Interest

Deep brain stimulation (DBS), a favored treatment option for Parkinsons disease and treatment resistant depression, restores disrupted brain mechanisms to default states and is likely to extend to mental and movement disorders and neurodegenerative conditions. All are associated with gradual cognitive, affective and/or behavioral changes. DBS confronts family/carers with emotionally, physically, and mentally trying challenges, as successful symptomatic relief may be accompanied by instantaneous apparent identity changes. Patients become restored to a previous state, “normal” or species-typical in ways they have never been, or placed in an enhanced state of subjective well-being. They are likely to feel like a new person, both to themselves and to others. How clinicians conceptualize patients’ post-DBS personality changes has profound ethical implications not only for the patient but also for their family/carers. These amplify existing conflicts of interests.

Fragments of Selves and The Importance of Emotionality: Ethicolegal Challenges in Assessing Capacities, Consent, and Communicating with MCS Patients and the Need for Guidelines

Bendtsen (2013) describes difficulties in providing reliable diagnoses of minimally conscious state (MCS), as patients’ associated injuries may lead to compromised motor or perceptual abilities, potentially involving those abilities involved in communicating awareness, such as hearing, seeing, and movement; the article proposes strategies to manage consent and assent. I suggest that the central challenge is assessing decision-making capacity rather than diagnosis. Recent technological advances may permit reliable diagnoses of MCS regardless of injuries affecting the potential for communication (Rosanova et al. 2012). Yet assessing MCS patients’ comprehension and decision-making capacity is exceptionally complex, as truly autonomous decisions involve subjective values and emotionality, both likely to change as recovery proceeds. This impacts upon possibilities for consent and assent. Clinical and legal tests of decision-making capacity assess the ability to absorb and remember information, balance it, arrive at a considered decision, and communicate this. Arriving at a considered decision involves emotionality, as emotions are essential underpinnings for the subjective valuations that enable us to choose between alternatives. Truly autonomous decision making involves an integration of perceptual and communicative abilities with emotionality, subjective values, memory, and the ability to reason (Mackenzie and Sakel 2011; Mackenzie and Watts 2011). Hence, decisions that should be accepted as competent and autonomous depend upon a patient reaching a level of integration of the information-processing subsystems underlying consciousness sufficient to give rise to a subjective experience of selfhood. Yet MCS communication via neuroimaging technologies may involve islands of cognition and emotionality: unimpaired fragments of self, as opposed to an integrated consciousness. MCS patients’ ability to respond to questions or commands may be disconnected from emotionality. They may be able to imagine playing tennis on request but remain unable either to express or to experience the emotions or subjective values needed to make ethically and legally au-

Sexual health, neurodiversity and capacity to consent to sex

Purpose – The purpose of this paper is to clarify: the law on capacity to consent to sex; ethical and legal factors in assessing decision‐making capacity of those on the autism (ASD) and neurodiverse (ND) spectrums; and the legal obligations to promote sexual health devolving to local authorities from April 2013. We make proposals to ensure socio‐sexual competence by providing appropriate sex and relationship education (SRE).Design/methodology/approach – Critical legal analysis of case law and legislation on the capacity of the vulnerable to consent to sex, in the context of those diagnosed on the autism and neurodiverse spectrums.Findings – Consent to sex cannot be regarded as informed, autonomous, valid and lawful without socio‐sexual competence. Sex and relationships education should be provided to ensure socio‐sexual competence, in keeping with international conventions and national laws and policies.Research limitations/implications – There is an urgent need for research into the needs and experience...

How the Politics of Inclusion/Exclusion and the Neuroscience of Dehumanization/Rehumanization Can Contribute to Animal Activists' Strategies: Bestia Sacer II

Juxtaposing the continental philosophy of inclusion/exclusion and the cognitive and affective neuroscience of dehumanization, infrahumanization, and rehumanization may inform animal activists’ strategies. Both fields focus upon how we decide who counts and who doesn’t. Decisions over who’s human (or like us) and who isn’t (i.e., who’s an animal, or not like us) are not simply about species membership but involve biopolitical value judgments over who we wish to include or exclude. Posthumanists seek to disrupt the biopolitics of inclusion/exclusion, partly to heal ethical and political relations between human and nonhuman animals. Calarco calls this jamming Agamben’s anthropological machine. Bestia Sacer are those designated as included or excluded, moving among zones of humans, nonhuman animals, and things. Cognitive and affective neuroscience describes how mechanisms of inclusion/exclusion function in dehumanization, infrahumanization, and rehumanization. Humans assign varying degrees of humanity to others according to in-group/out-group status in judgments open to manipulation. Investigating how these mechanisms operate in human perceptions of nonhuman animals may inform activist strategies, transforming ethical and political relations between humans and nonhuman animals and end the exclusion of Bestia Sacer.