Education versus screening: the use of capacity to consent tools in psychiatric genomics.

Informed consent procedures for participation in psychiatric genomics research among individuals with mental disorder and intellectual disability can often be unclear, particularly because the underlying ethos guiding consent tools reflects a core ethical tension between safeguarding and inclusion. This tension reflects important debates around the function of consent tools, as well as the contested legitimacy of decision-making capacity thresholds to screen potentially vulnerable participants. Drawing on human rights, person-centred psychiatry and supported decision-making, this paper problematises the use of consent procedures as screening tools in psychiatric genomics studies, particularly as increasing normative emphasis has shifted towards the empowerment and participation of those with mental disorder and intellectual disabilities. We expound on core aspects of supported decision-making, such as relational autonomy and hermeneutic competence, to orient consent procedures towards a more educative, participatory framework that is better aligned with developments in disability studies. The paper concludes with an acknowledgement of the pragmatic and substantive challenges in adopting this framework in psychiatric genomics studies if this participatory ethos towards persons with mental disorder and intellectual disability is to be fully realised.

Articulating the sources for an African normative framework of healthcare: Ghana as a case study.

Bioethics is gradually becoming an important part of the drive to increase quality healthcare delivery in sub-Saharan African countries. Yet many healthcare service-users in Africa are familiar with incidences of questionable health policies and poor healthcare delivery, leading to severe consequences for patients. We argue that the overarching rights-based ethical administrative framework recently employed by healthcare authorities contributes to the poor uptake and enforcement of current normative tools. Taking Ghana as a case study, we focus on the cultural ethical context and we tease out the concepts of the good and the ethical among the Akan and Bulsa ethnic groups. We point out three tenets towards building a normative framework that can resonate with service-users and practitioners: ontological communitarianism; empathic humanism; and virtuous character. Finally, we indicate how these core tenets can be dovetailed into building an effective normative framework and into the training of healthcare providers.

Prioritising African perspectives in psychiatric genomics research: Issues of translation and informed consent.

Psychiatric genomics research with African populations comes with a range of practical challenges around translation of psychiatric genomics research concepts, procedures, and nosology. These challenges raise deep ethical issues particularly around legitimacy of informed consent, a core foundation of research ethics. Through a consideration of the constitutive function of language, the paper problematises like-for-like, designative translations which often involve the 'indigenization' of English terms or use of metaphors which misrepresent the risks and benefits of research. This paper argues that effective translation of psychiatric genomics research terminology in African contexts demands substantive engagement with African conceptual schemas and values. In developing attenuated forms of translational thinking, researchers may recognise the deeper motivational reasons behind participation in research, highlighting the possibility that such reasons may depart from the original meaning implied within informed consent forms. These translational issues might be ameliorated with a critical re-examination of how researchers develop and present protocols to institutional ethics review boards.

An Aide Memoire for a Balancing Act? Critiquing The 'Balance Sheet' Approach to Best Interests Decision-Making.

The balance sheet is commonly used as a deliberative approach to decide best interests in Court of Protection cases in England and Wales, since Thorpe LJ in Re A (Male Sterilisation) described the balance sheet as a tool to enable judges and best interests decision-makers to quantify, compare, and calculate the different options at play. Recent judgments have critically reflected on the substance and practical function of the balance sheet approach, highlighting the practical stakes of its implicit conceptual assumptions and normative commitments. Using parallel debates in proportionality, we show that the balance sheet imports problematic assumptions of commensurability and aggregation, which can both overdetermine the outcome of best interests decisions and obfuscate the actual process of judicial deliberation. This means that the decision-making of judges and best interests assessors more generally could fail to properly reflect the nature of values at stake, as well as the skills of practical judgment needed to compare such values with sensitivity and nuance. The article argues that critical reflection of the balance sheet makes vital space for a more contextualised, substantive mode of deliberation which emphasises skills of qualitative evaluation towards enhancing conditions of articulation around the range of values involved in best interests decision-making.

Ethical dangers of facial phenotyping through photography in psychiatric genomics studies.

Psychiatric genomics research protocols are increasingly incorporating tools of deep phenotyping to observe and examine phenotypic abnormalities among individuals with neurodevelopmental disorders. In particular, photography and the use of two-dimensional and three-dimensional facial analysis is thought to shed further light on the phenotypic expression of the genes underlying neurodevelopmental disorders, as well as provide potential diagnostic tools for clinicians. In this paper, I argue that the research use of photography to aid facial phenotyping raises deeply fraught issues from an ethical point of view. First, the process of objectification through photographic imagery and facial analysis could potentially worsen the stigmatisation of persons with neurodevelopmental disorders. Second, the use of photography for facial phenotyping has worrying parallels with the historical misuse of photography to advance positive and negative eugenics around race, ethnicity and intellectual disability. The paper recommends ethical caution in the use of photography and facial phenotyping in psychiatric genomics studies exploring neurodevelopmental disorders, outlining certain necessary safeguards, such as a critical awareness of the history of anthropometric photography use among scientists, as well as the exploration of photographic methodologies that could potentially empower individuals with disabilities.

The ethics of global psychiatric genomics: Multilayered challenges to integrating genomics in global mental health and disability-A position paper of the Oxford Global Initiative in Neuropsychiatric GenEthics (NeuroGenE).

Psychiatric genomics has the potential to radically improve the prevention and early intervention of serious mental and neurodevelopmental disorders worldwide. However, little work has been done on the ethics of psychiatric genomics-an oversight that could result in poor local uptake, reduced practical/clinical application, and ethical violations in this rapidly developing area of scientific research. As part of the Global Project of the Stanley Center for Psychiatric Research, the Global Initiative in Neuropsychiatric GenEthics (NeuroGenE) based at the University of Oxford aims to embed ethical inquiry within scientific investigation and engage with fundamental ethical questions around a psychiatric genomics approach to mental and neurodevelopmental disorder. This position paper sets out the core aims of the NeuroGenE research programme and explores the importance of a crosscutting research orientation in this field based on multidisciplinary methodologies which can ensure that efforts to translate and apply global psychiatric genomics in public policy and clinical practice are ethically grounded strategies, respectful of different cultures and contexts.

Psychiatric Genomics and Mental Health Treatment: Setting the Ethical Agenda.

Realizing the benefits of translating psychiatric genomics research into mental health care is not straightforward. The translation process gives rise to ethical challenges that are distinctive from challenges posed within psychiatric genomics research itself, or that form part of the delivery of clinical psychiatric genetics services. This article outlines and considers three distinct ethical concerns posed by the process of translating genomic research into frontline psychiatric practice and policy making. First, the genetic essentialism that is commonly associated with the genomics revolution in health care might inadvertently exacerbate stigma towards people with mental disorders. Secondly, the promises of genomic medicine advance a narrative of individual empowerment. This narrative could promote a fatalism towards patients' biology in ways that function in practice to undermine patients' agency and autonomy, or, alternatively, a heightened sense of subjective genetic responsibility could become embedded within mental health services that leads to psychosocial therapeutic approaches and the clinician-patient therapeutic alliance being undermined. Finally, adopting a genomics-focused approach to public mental health risks shifting attention away from the complex causal relationships between inequitable socio-economic, political, and cultural structures and negative mental health outcomes. The article concludes by outlining a number of potential pathways for future ethics research that emphasizes the importance of examining appropriate translation mechanisms, the complementarity between genetic and psychosocial models of mental disorder, the implications of genomic information for the clinician-patient relationship, and funding priorities and resource allocation decision making in mental health.

The hermeneutics of recovery: Facilitating dialogue between African and Western mental health frameworks.

The widespread use of faith-based and traditional healing for mental disorders within African contexts is well known. However, normative responses tend to fall within two camps: on one hand, those oriented towards the biomedical model of psychiatry stress the abuses and superstition of such healing, whilst critics adopting a more 'local' perspective have fundamentally challenged the universalist claims of biomedical diagnostic categories and psychiatric treatments. What seemingly emerges is a dichotomy between those who endorse more 'universalist' or 'relativist' approaches as an analytical lens to the challenges of the diverse healing strands within African contexts. In this article, we draw upon the resources of philosophy and existing empirical work to challenge the notion that constructive dialogue cannot be had between seemingly incommensurable healing practices in global mental health. First, we suggest the need for much-needed conceptual clarity to explore the hermeneutics of meaning, practice, and understanding, in order to forge constructive normative pathways of dialogue between seemingly incommensurable values and conceptual schemas around mental disorder and healing. Second, we contextualise the complex motives to emphasise difference amongst health practitioners within a competitive healing economy. Finally, we appeal to the notion of recovery as discovery as a fruitful conceptual framework which incorporates dialogue, comparative evaluation, and cross-cultural enrichment across divergent conceptualisations of mental health.

Constructing female sexual and reproductive agency in mental capacity law.

Respect for the sexual, reproductive, and relational choices of women with learning disabilities remains unrealised to date, despite the autonomy-based focus of mental capacity law in England and Wales as well as the UN Convention for the Rights of Persons with Disabilities. Instead, such women appear trapped within a triple-bind - where they not only act in ways that might reinforce oppressive norms around gender and disability, but they are mentally incapable of even making such self-subjugating choices. The triple-bind emerges for two reasons: first, learning disability is understood as an essentialist property that determines action; second, the normative logic of feminism and the social model of disability is bound to the binary between emancipation - subjugation, which excludes the nuanced and ambiguous agency of women with learning disabilities as a result. What is needed instead is an alternative framework of female agency that can accommodate a mode of ambivalence, indifference, inhabitation, and at times, complicity - in other words, instances where women make choices that appear contrary to their emancipation from disabling, patriarchal norms or relationships. Women with learning disabilities navigate a complex nexus of norms, power relations, and relational connections, some of which are coercive and oppressive, yet simultaneously subjectively affirming and enabling. I argue for an alternative analytical framework of female agency in order to accommodate how women with learning disabilities undertake the complex negotiation of power and social norms, as well as render visible their agency in their sexual, relational, and reproductive choices.