The Parallel Arts Festival at the 14th World Congress of Bioethics and the 7th National Bioethics Conference, Bengaluru

The theme of the 14th World Congress of Bioethics (WCB) was “Health for All in an Unequal World; Obligations of Global Bioethics”. The Parallel Arts Festival was embedded within the programme of the Congress and curated to reflect its theme.

Consultation on the feasibility and ethics of specific, probable Controlled Human Infection Model study scenarios in India: A report

On March 6, 2019, a workshop was held as part of a larger public consultation exercise to evaluate the perceptions of participants from diverse backgrounds of studies involving Controlled Human Infection Models (CHIMs) (1,2) in India, through three specific case scenarios. This workshop was organised by the Health and Humanities Division of the St. John’s Research Institute, Bangalore with funding from the Translational Health Science and Technology Institute (TSHTI), Faridabad (www.thsti.res.in), an autonomous institute of the Department of Biotechnology, Government of India This was an on-going effort of the Division to bring public discourse centre stage in the discussion on the use, ethics and regulations related to CHIM studies, and the introduction of such studies in India. Participants included epidemiologists, community/public health experts, microbiologists, infectious disease specialists, basic and translational scientists, ethicists, journalists and lawyers

Public engagement in the context of a CHIM study

Public engagement especially in new and contested areas of medical research is an essential ethical requirement. It helps to build trust, to embed ethical discourse in public beliefs and values and widen the accountability and the governance of biomedical research. Historically, ethical codes resulted from public protest following unethical medical research practices. Unethical practices do continue to a certain extent, primarily among unempowered communities. The need for public awareness, public deliberation and public advocacy are even more important in a country like India, where “research” is not understood, where paternalism on the part of the health professional, and the non-questioning attitude of the patient/participant have been customary, followed in recent times, by mistrust and an expectation of corruption in the public mind when dealing with a healthcare set up. CHIM studies carry various levels of unknowns. There are challenges of public non-comprehension of the need for being ‘infected’; of families and communities being at risk; of possible high levels of compensation being offered as inducements; of other public health / preventive measures being supplanted. It is important for researchers and regulators in India not to rush into implementing such studies but to first engage with the public, listen to their concerns; and initiate deliberative mechanisms for public — researcher dialogue; and invest in public advocacy.

Health for all in an unequal world: Obligations of global bioethics

The theme of the joint 14th World Congress of Bioethics and 7th National Bioethics Conference Congress “Health for all in an unequal world: Obligations of global bioethics” is of critical relevance in the present global context. Although the world is better off in terms of improved health status of people by many measures than before, there exist colossal gaps across and within populations. Much needs to be done to respond to the lack of access to healthcare, poor quality of living and working conditions, and deteriorating quality of overall environment which affects more adversely the already deprived. We take this opportunity to make a few observations about the current status of affairs on this front, and offer brief analytical insights into the complex origins of the global health scenario characterised by disparities. We revisit the original conception of bioethics and suggest that it is well placed to respond to the current global crisis of inexorably widening disparities in health and wealth, and that global bioethics has an obligation to engage with this crisis.

The funny world of medical clowns.

Many emotions are encountered in a hospital; distress, apprehension and fear, juxtaposed against relief, gratitude and happiness. Both sets are manifested in different people or in the same individual at different points of time. So interlinked are these two sets of emotions, and so frequent their occurrence, that doctors may sometimes become immune to the patient’s emotional state while focusing on the physical aspect. Taking medical histories, recommending investigations and treatment procedures, conducting medical examinations have all become mechanical, sometimes “detached”, procedures. They can also be a source of stress for a medical student who is trying to recall the “right” things to be done. However, the importance of a happy, cooperative patient cannot be over emphasised, both for the doctor to arrive at the right diagnosis as well as to aid in the process of healing itself. Studies have shown that anxiety, anger and such emotions tend to increase the perception of pain; something that the medical encounter aims to alleviate. It is, therefore, critical to address the patient’s negative emotions and prevent their physical manifestations

The ethics of research on stored biological samples: outcomes of a Workshop.

Research is often conducted using laboratory samples and data. The ethical issues that arise in a study involving residual samples are considerably different from those arising in a prospective study. Some of these ethical issues concern the risks to confidentiality, individual autonomy, trust in and credibility of the researcher or the research, commercialisation and even the nomenclature involved.

Perceptions of stigma among medical and nursing students and tuberculosis and diabetes patients at a teaching hospital in southern India.

Stigma has a significant impact on the diagnosis of a variety of illnesses, patients’ compliance with treatment and their recovery from these diseases. However, the Indian medical and nursing curriculum has given relatively little attention to recognising and addressing the issue of stigma. This study compared the perception of stigma with respect to tuberculosis (TB) and diabetes mellitus (DM) among medical and nursing students to that among patients with these diseases. The Explanatory Model Interview Catalogue (EMIC) questionnaire was used for all patients and student groups. Focus group discussions were held with only the students to understand their concept of stigma and the challenges they face while addressing stigma, and to explore their role in addressing stigma. The data showed that patients with TB prefer not to disclose their illness, while DM is not perceived of as stigmatising by patients. As a group, medical and nursing students attached excessive stigma to patients with both DM and TB, and this may mean that medical professionals subconsciously do harm through their interactions with patients and the attitudes they project to society. The perceptions of stigma were linked to the patient’s socioeconomic background, apart from the medical condition itself. The students recognised that they lacked the skills to understand and address stigma. We recommend that the subject of stigma be integrated into the curriculum of medical and nursing students.

Listening to the voices of the general public in India on biomedical research – an exploratory study.

Medical research, from clinical trials to novel research on stored samples, is growing rapidly in India. Ethical regulations largely reflect standard international guidelines and the norms of “good clinical practice”. Through in-depth interviews, this study aimed to explore the perceptions, motivations and concerns of the public with respect to participation in clinical trials and biobanking-related research. It was found that the expectation of therapeutic benefit reflects “therapeutic misconception” and this, along with a poor understanding of research, leads to favourable participation in clinical trials. A relatively low level of awareness and knowledge of health matters and research (health literacy), along with the differences in the power of the doctor and the participant, lead to an unquestioning trust in the physician or the institution conducting the research. “Informed consent” is thought to protect the interests of the researcher and the institution rather than the participants’ rights. Biobanking research was very new to the participants and relatively unknown. Thus, it has not yet filtered into the public consciousness. As a result, the perceptions of the general public do not appear to be sufficiently evolved.

Drama Review: HeLa – the play

engaged in the study of medical and research ethics. The brilliant dramatisation of this story of human loss and gain to humankind by the well-known playwright and actor, Adura Onashile, is an emotional wringer. Onashile’s solo performance in the play, directed by Graham Eatough and produced by Iron Oxide, has kept the audiences riveted.