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.
Consider the following case studies: Jane was a 58-year old woman living in Northern Ghana, married to John, a lawyer and a member of the royal family of one of Ghana's ethnic groups. Jane had been unwell, had driven herself to the hospital, and when arrived was assessed as requiring oxygen. The administering nurse failed to recognize that the oxygen cylinder given to Jane was virtually empty. Jane suffocated to death in the hospital. In John's words, 'The circumstances of her death simply expose a failed healthcare system. How an Intensive Care Unit can be without a doctor or even an experienced nurse compounded by a shortage of oxygen during a resuscitation is difficult to imagine. We accept the death, we know it's not God's will.' No one has been charged for her death, no disciplinary action or structural changes have been made. Akua was a regular visitor to the antenatal clinic at the Health Centre in the small fishing town of Krom, in the central region of Ghana. The nurses advised her to go to the Regional Hospital to deliver her baby since they foresaw complications beyond the capacity of a small rural clinic. Akua chose to go to a prayer camp, but she later arrived at the Krom Health Centre when in labour. Upon examination, the midwife realized that something was gravely wrong. Akua passed out and fell down from the delivery bed. An ambulance was called and Akua was rushed to the Regional Hospital, where they drove directly to the maternity unit upon arrival, but were refused, a nurse stating that Akua would need to go through the emergency unit first. Upon arrival there, Akua was declared dead.
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.
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.
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