Ethical challenges in FASD prevention: Scientific uncertainty, stigma, and respect for women's autonomy.

Fetal alcohol spectrum disorder (FASD) is a leading form of neurodevelopmental delay in Canada, affecting an estimated 3000 babies per year. FASD involves a range of disabilities that entail significant costs to affected individuals, families, and society. Exposure to alcohol in utero is a necessary factor for FASD development, and this has led to FASD being described as "completely preventable". However, there are significant ethical challenges associated with FASD prevention. These challenges revolve around 1) what should be communicated about the risks of alcohol consumption during pregnancy, given some ongoing scientific uncertainty about the effects of prenatal alcohol exposure, and 2) how to communicate these risks, given the potential for stigma against women who give birth to children with FASD as well as against children and adults with FASD. In this paper, we share initial thoughts on how primary care physicians can tackle this complex challenge. First, we recommend honest disclosure of scientific evidence to women and the tailoring of information offered to pregnant women. Second, we propose a contextualized, patient-centred, compassionate approach to ensure that appropriate advice is given to patients in a supportive, non-stigmatizing way.

Examining chronic care patient preferences for involvement in health-care decision making: the case of Parkinson's disease patients in a patient-centred clinic.

BACKGROUND: Patient-centred care is a recommended model of care for Parkinson's disease (PD). It aims to provide care that is respectful and responsive to patient preferences, values and perspectives. Provision of patient-centred care should entail considering how patients want to be involved in their care. OBJECTIVE: To understand the participation preferences of patients with PD from a patient-centred care clinic in health-care decision-making processes. DESIGN, SETTING AND PARTICIPANTS: Mixed-methods study with early-stage Parkinson's disease patients from a patient-centred care clinic. Study involved a modified Autonomy Preference Index survey (N=65) and qualitative, semi-structured in-depth interviews, analysed using thematic qualitative content analysis (N=20, purposefully selected from survey participants). Interviews examined (i) the patient preferences for involvement in health-care decision making; (ii) patient perspectives on the patient-physician relationship; and (iii) patient preferences for communication of information relevant to decision making. RESULTS: Preferences for participation in decision making varied between individuals and also within individuals depending on decision type, relational and contextual factors. Patients had high preferences for communication of information, but with acknowledged limits. The importance of communication in the patient-physician relationship was emphasized. DISCUSSION: Patient preferences for involvement in decision making are dynamic and support shared decision making. Relational autonomy corresponds to how patients envision their participation in decision making. Clinicians may need to assess patient preferences on an on-going basis. CONCLUSION: Our results highlight the complexities of decision-making processes. Improved understanding of individual preferences could enhance respect for persons and make for patient-centred care that is truly respectful of individual patients' wants, needs and values.

What Is Everyday Ethics? A Review and a Proposal for an Integrative Concept.

"Everyday ethics" is a term that has been used in the clinical and ethics literature for decades to designate normatively important and pervasive issues in healthcare. In spite of its importance, the term has not been reviewed and analyzed carefully. We undertook a literature review to understand how the term has been employed and defined, finding that it is often contrasted to "dramatic ethics." We identified the core attributes most commonly associated with everyday ethics. We then propose an integrative model of everyday ethics that builds on the contribution of different ethical theories. This model proposes that the function of everyday ethics is to serve as an integrative concept that (1) helps to detect current blind spots in bioethics (that is, shifts the focus from dramatic ethics) and (2) mobilizes moral agents to address these shortcomings of ethical insight. This novel integrative model has theoretical, methodological, practical, and pedagogical implications, which we explore. Because of the pivotal role that moral experience plays in this integrative model, the model could help to bridge empirical ethics research with more conceptual and normative work.

Deep brain stimulation: a principled and pragmatic approach to understanding the ethical and clinical challenges of an evolving technology.

DBS has emerged in the past few decades as a powerful clinical tool in the treatment of movement disorders such as dystonia and Parkinson's disease. As a result of its striking effects, the therapeutic utility of DBS has been investigated in a number of different neurological and neuropsychiatric conditions. Ethical discussion has accompanied this evolution of DBS and has led to the identification of a number of important ethical challenges. In this chapter, we review these challenges based on three of the key principles of biomedical ethics (autonomy, justice, and non-maleficence). Specifically, we adopt a pragmatic perspective by reviewing the ethical issues as they emerge within the context of Parkinson's disease, as this can serve to guide further ethical thinking on the future of DBS. Through this contextualization, we enrich the meaning of the Ethical principles and increase their specificity. We hope that this contribution will inform readers and also stimulate discussion related to areas where important questions remain unanswered and where further research would need to be undertaken to understand and enact ethical principles.

Comments and reflections on ethics in screening for biomarkers of prenatal alcohol exposure.

Early identification of and intervention for fetal alcohol spectrum disorder (FASD) has been shown to optimize outcomes for affected individuals. Detecting biomarkers of prenatal alcohol exposure (PAE) in neonates may assist in the identification of children at risk of FASD enabling targeted early interventions. Despite these potential benefits, complicated ethical issues arise in screening for biomarkers of PAE and these must be addressed prior to the implementation of screening programs. Here, we identify and comment, based on a North American perspective, on concerns raised in the current ethical, social, and legal literature related to meconium screening for PAE. Major ethical concerns revolve around the targeting of populations for PAE screening, consent and respect for persons, stigma and participation rates, the cost-benefit analysis of a screening program, consequences of false-positive and false-negative test results, confidentiality and appropriate follow-up to positive screen results, and the use of screen results for criminal prosecution. We identify gaps in the literature on screening for PAE, most notably related to a lack of stakeholder perspectives (e.g., parents, healthcare providers) about screening and the ethical challenges it presents.