Our Newspaper as Care: Narrative Approaches in Fanon's Psychiatry Clinic.

This paper argues that the newspaper Notre Journal enshrined the importance of narrative in the revolutionary psychiatry of its founder and editor, Frantz Fanon. Anchoring my analysis in the interdisciplinarity of the medical humanities, I demonstrate how care at Hôpital Blida-Joinville in colonial Algeria was mediated by the written word. I examine Fanon's physician writing and editorial texts detailing the use of narrative approaches in the clinic. As an object of care, Notre Journal's promotion of psychic healing, social actions, and engaged professional practice shaped the interactions and experiences of patients and staff. Printed and distributed to the wider institution, the newspaper created community-during an oppressive French Occupation and at the outset of the War of Independence-in addition to nurturing creativity, curiosity, solidarity, and accountability. Still, Fanon would come to recognize the limits of narrative methods amidst cultural oral traditions, illiteracy, and divergent attitudes about narrating the self.

The Epistemic Injustice of Racial Injustice.

The treatment of essential health care providers belonging to racial and ethnic minority groups is a bioethical issue. Minority providers hold valuable knowledge of the racism they experience. However, they are continuously doubted, discredited, and disempowered as epistemic interlocutors. Such epistemic injustice has ethical repercussions for the treatment of patients. The unwillingness of colleagues to receive the authors' experiential knowledge of racism, their testimonies on its impacts, and their efforts to correct inaccurate judgments amount to a morally problematic epistemological stance. Additional moral considerations include the lack of guidance on dealing with racism in health care institutions, the marginalization of minority providers, an inflexible medical culture, the need for anti-racist frameworks, and the unique vulnerability of students and trainees. These narratives call for a sustained effort in balancing the pursuit of individual virtues and the creation of systemic conditions necessary to eliminate racial injustice.

Bringing solidarity, justice and equity to the centre of the bioethics discourse: Overview of proceedings of the joint 14th World Congress of Bioethics and the 7th National Bioethics Conference, 2018.

Forum for Medical Ethics Society (FMES), Mumbai; St. John's National Academy of Health Sciences (SJNAHS), Bengaluru; Society for Community Health Awareness Research and Action (SOCHARA,) Bengaluru and SAMA Resource Group for Women and Health, New Delhi co-hosted the joint 14th World Congress of Bioethics (WCB) and the 7th National Bioethics Conference (NBC) in Bengaluru. The theme of the Congress was, "Health for all in an unequal world: Obligations of Global Bioethics". The conference was held at an opportune time when we also commemorate 70 years of the Declaration of Human Rights of 1948 and 40 years of the Alma Ata Declaration of 1978. Both declarations affirmed Health as a fundamental Human Right. We have discussed earlier the significance of the congress theme in the year 2018.

Collaboration and involvement of persons with lived experience in planning Canada's At Home/Chez Soi project.

Planning the implementation of evidence-based mental health services entails commitment to both rigour and community relevance, which entails navigating the challenges of collaboration between professionals and community members in a planning environment which is neither 'top-down' nor 'bottom-up'. This research focused on collaboration among different stakeholders (e.g. researchers, service-providers, persons with lived experience [PWLE]) at five project sites across Canada in the planning of At Home/Chez Soi, a Housing First initiative for homeless people with mental health problems. The research addressed the question of what strategies worked well or less well in achieving successful collaboration, given the opportunities and challenges within this complex 'hybrid' planning environment. Using qualitative methods, 131 local stakeholders participated in key informant or focus group interviews between October 2009 and February 2010. Site researchers identified themes in the data, using the constant comparative method. Strategies that enhanced collaboration included the development of a common vision, values and purpose around the Housing First approach, developing a sense of belonging and commitment among stakeholders, bridging strategies employed by Site Co-ordinators and multiple strategies to engage PWLE. At the same time, a tight timeline, initial tensions, questions and resistance regarding project and research parameters, and lack of experience in engaging PWLE challenged collaboration. In a hybrid planning environment, clear communication and specific strategies are required that flow from an understanding that the process is neither fully participatory nor expert-driven, but rather a hybrid of both.

Consenting for current genetic research: is Canadian practice adequate?

BACKGROUND: In order to ensure an adequate and ongoing protection of individuals participating in scientific research, the impacts of new biomedical technologies, such as Next Generation Sequencing (NGS), need to be assessed. In this light, a necessary reexamination of the ethical and legal structures framing research could lead to requisite changes in informed consent modalities. This would have implications for Institutional Review Boards (IRBs), who bear the responsibility of guaranteeing that participants are verifiably informed, and in sufficient detail, to understand the reality of genetic research as it is practiced now. Current literature allowed the identification of key emergent themes related to the consent process when NGS was used in a research setting. METHODS: We examined the subjects of secondary use, sharing of materials and data, and recontacting participants as outlined in the Canadian Informed Consent templates and the accompanying IRB instructions for the conduct of genetic research. The research ethics policy applied by the three Canadian research agencies (Tri-Council Policy Statement, 2nd Edition) was used to frame our content analysis. We also obtained IRB-approved consent forms for genetic research projects on brain and mental health disorders as an example of a setting where participants might present higher-than-average vulnerability. RESULTS: Eighty percent of documents addressed different modalities for the secondary use of material and/or data, although the message was not conveyed in a systematic way. Information on the sharing of genetic sequencing data in a manner completely independent of the material from which it originated was absent. Grounds for recontacting participants were limited, and mainly mentioned to obtain consent for secondary use. A feature of the IRB-approved consent documents for genetic studies on brain and mental health disorders using NGS technologies, offered a complete explanation on sharing material and data and the use of databases. CONCLUSIONS: The results of our work show that in Canada, many NGS research needs are already dealt with. Our analysis led us to propose the addition of well-defined categories for future use, adding options on the sharing of genetic data, and widening the grounds on which research participants could consent to be recontacted.

Genetic counseling practice in next generation sequencing research: implications for the ethical oversight of the informed consent process.

The potential for next generation sequencing research (NGS) to generate individual genetic results could have implications for the informed consent process and the provision of genetic counseling. We undertook a content analysis of informed consent templates and guidelines produced by Canadian institutional review boards, purposively sampling documents used by researchers to obtain consent from participants in genetics studies. Our goal was to examine the extent to which the informed consent documents addressed genetic counseling and the return of individual genetic results. Our analysis reveals that the majority of informed consent documents did not mention genetic counseling while several did not mention the return of results. We found differences in the ways in which documents addressed availability of counseling, eligibility criteria for referral to a genetic counselor, genetic counselor involvement, provision of services to family members of participants and incidental findings. From an ethical standpoint, consent documents should provide appropriate information so that participants may make an informed decision about their participation in research. The need to ensure adequate counseling for study populations in an NGS research context will necessarily involve adapting values that underlie care in genetic counseling practice. If the interests of research participants are to be truly promoted, the drafting and review of informed consent documents should give proper due to genetic counseling.

Personalized medicine in oncology: ethical implications for the delivery of healthcare.

While personalized medicine brings benefits for the treatment of cancer, there are still key ethical issues at stake in developing personalized medicine in oncology. We propose an ethical analysis of personalized medicine in oncology that highlights the particularities of cancer care, critically assesses the scientific advances behind personalized medicine in oncology and emphasizes fairness in resource allocation in the delivery of personalized healthcare. This allows for a broader understanding of the real impacts on both recipients and the healthcare system.

Ethnocultural community leaders' views and perceptions on biobanks and population specific genomic research: a qualitative research study.

Substantial investments were made in population based biobanks over the past decade. Ethnocultural community members are both sponsors and beneficiaries of biobanks. In addition, the success of biobank projects depends on community support and participation. Yet there are few empirical data on views, perceptions and interests of ethnocultural communities on biobanks. This silent gap in genomics, ethics and policy literatures has to be addressed. We conducted a qualitative research study with in-depth interviews of ethnocultural community leaders (e.g., members of the Canadian Parliament, school commissioners) on their perspectives concerning population specific genomics research and biobanks. An equal partnership model where public is not only informed, but also involved in decision-making processes was perceived as an essential democratic requisite. These empirical data on ethnocultural community leaders' views, interests and perceptions identify several key socio-cultural and ethical factors that can be decisive for effective and sustainable community involvement in biobanks.

Pharmacogenomics research involving racial classification: qualitative research findings on researchers' views, perceptions and attitudes towards socioethical responsibilities.

BACKGROUND: Racial classification of study samples has been a common practice since the early days of pharmacogenomics research. The use of race as an axis of stratification in the study of human genetic variation and population differences in drug response has come under intense scrutiny recently, particularly among policy makers, clinicians and researchers. However, there are no published empirical data on how genomics scientists perceive ethical concerns or view their own professional roles when they are confronted with this issue in their everyday practice or have to decide themselves whether racial classification should be a cornerstone of their research work. OBJECTIVES: To investigate the views and perceptions of researchers on the use of racial classification in pharmacogenomics research using a qualitative research methodology. METHODS: We interviewed genomics researchers about their perceptions on pharmacogenomics, race and science, population-based genomics research and the attendant implications for their professional duties. We sought out researchers who self-identified with many of the populations likely to be solicited for race-specific pharmacogenomics research. A thematic investigation of the semistructured interviews was undertaken using the qualitative data software program ATLAS.ti to extract and systematically analyze complex phenomena (e.g., professional viewpoints) embedded in the narratives from the interviews. RESULTS: The participants expressed the 'doubled-edged' nature of pharmacogenomics research involving racial classification while also having a cautiously optimistic view of race-based therapeutics. They believed that pharmacogenomics could improve health outcomes for racially defined populations in the context of health disparities. Sensitized to racism and potential abuses, they expressed concerns and need for precautionary measures over the sensitive nature of racially categorized research results. On the other hand, researchers perceived themselves as being responsible primarily for providing raw scientific data. CONCLUSION: Researchers engaged in genomics investigations appear to display a guarded and yet favorable perception on the utility of race in pharmacogenomics investigations. Interestingly, researchers remain sceptical of their own roles vis-à-vis ethics and delegating socioethical responsibilities to ethicists was seen as a way to remedy this shortfall instead of broadening the scope of self-governance in scientific practice to socioethical issues. While these data do not necessarily reflect views and attitudes of all scientists, future science policy questions on how best to integrate molecular genetics with race-based therapeutics and incorporation of socioethical reflection in daily practice of genomics research need to consider the perceptions of scientists and similar 'upstream control points' in the process of knowledge generation and dissemination.

Guidelines for disclosing genetic information to family members: from development to use.

This paper presents the existing legal frameworks, professional guidelines and other documents related to the conditions and extent of the disclosure of genetic information by physicians to at-risk family members. Although the duty of a physician regarding disclosure of genetic information to a patient's relatives has only been addressed by few legal cases, courts have found such a duty under some circumstances. Generally, disclosure should not be permitted without the patient's consent. Yet, due to the nature of genetic information, exceptions are foreseen, where treatment and prevention are available. This duty to warn a patient's relative is also supported by some professional and policy organizations that have addressed the issue. Practice guidelines with a communication and intervention plan are emerging, providing physicians with tools that allow them to assist patients in their communication with relatives without jeopardizing their professional liability. Since guidelines aim to improve the appropriateness of medical practice and consequently to better serve the interests of patients, it is important to determine to what degree they document the 'best practice' standards. Such an analysis is an essential step to evaluate the different approaches permitting the disclosure of genetic information to family members.