Amid Explosions in Gaza, The Silence from the Bioethics Community is Deafening.

Bioethicists, through their writings, have been known to represent the conscience of the times. Speaking up against injustices, they have acted as moral compasses in the past. The events of October 7, 2023 and the resulting armed onslaught of Israeli forces on Gaza has created a huge humanitarian crisis. However, response of the global bioethics community appears muffled. In order to gain an objective insight, we conducted a scoping review of articles published on the current conflict in the top ten bioethics journals, as classified by Google metrics. Broadening this search, we included relevant grey literature and selected medical and global health journals in our review. All types of articles published from the initiation of the conflict to the end of March 2024 were included. Findings from our exercise highlight the paucity of articles published on this crisis. This apparent indifference towards the Gaza crisis can be explained either by reluctance by bioethicists to write on this issue or perhaps due to editorial restraints. We argue that bioethicists, instead of focusing on esoteric issues, have a greater moral responsibility to speak out against injustices in Gaza. Their silence amounts to complicity and erodes the very foundations of the discipline of bioethics.

Situation analysis of research ethics governance in Pakistan.

Background: Mapping of ethical governance structures is very useful in identifying strengths and weaknesses in order to uphold integrity and ensure standardization. However, reliable countrywide data about ethical review committees (ERCs) is unavailable in Pakistan. Aims: To evaluate the research ethics governance mechanisms at national level and at key healthcare institutions in Pakistan. Methods: This pilot mapping exercise used a mixed-methods approach, involving a cross-sectional survey of 19 key healthcare research institutions, and structured in-depth interviews with the chairs of the National Bioethics Committee and the Drug Regulatory Authority of Pakistan. Results: Eighteen institutions responded to the ethics mapping survey. Twelve public sector ERCs had a permanent structure and 17 had formal terms of reference. Seven ERCs claimed accreditation, although no central accreditation agency exists in Pakistan. Eight ERCs were chaired by the heads of the institutions. There was no fixed tenure for the heads in 13 committees, and 14 committees allowed multiple terms. Six ERCs had follow-up mechanisms for ethical approvals, and 6 took punitive actions in response to any deviation from an approved protocol, or to a scientific misconduct. Two respondents recalled situations where applicants pressured committee members for favourable approvals. Survey respondents mentioned the lack of central research ethics guidelines as a weakness of the national governance system. Structured interviews revealed the need for formal training of committee members and capacity strengthening, particularly for administrative staff. Conclusion: There is a need to develop guidelines for local ethics governance in Pakistan, and ensure accreditation of ERCs through the National Bioethics Committee to uphold the integrity of the ethics governance structure.

Fighting the COVID-19 pandemic: A socio-cultural insight into Pakistan.

During the COVID-19 pandemic, healthcare professionals around the world were driven by universal values of solidarity and duty to provide care. However, local societal norms and existing healthcare systems influenced interactions among physicians, and with patients and their families. An exploratory qualitative study design using in-depth interviews was undertaken with physicians working at two public sector hospitals in Karachi, Pakistan. Using the constant comparison method of data analysis, several key themes were identified highlighting norms of kinship and interdependencies characteristic of collectivistic societies that influenced professional interactions. The role of seniors in the hierarchical society of Pakistan played a major role in provision of care. Physicians reported numerous challenges in dealing with patients and their families amidst public denial fueled due to ill-formed government policies. This included interruption of funeral rites which undermined public trust. The study provides insights into the local moral world of two healthcare institutions in Pakistan.

Indirect costs associated with "free" paediatric haemodialysis: Experience from Karachi, Pakistan.

Treatment of children with end-stage kidney disease (ESKD), requiring maintenance dialysis, poses unique challenges. In low- and middle-income countries, lifelong treatment leads to significant stress on the overall family unit. Families face serious financial, social and psychological consequences despite free treatment. This pilot study, utilising primarily quantitative methods, supplemented by two case studies, is set in Sindh Institute of Urology and Transplantation, a tertiary care hospital in Karachi, Pakistan, providing free medical treatment. Fifty-two caretakers of children receiving haemodialysis for more than five years participated in the quantitative arm. Findings reveal that additional financial challenges may send the entire household into financial catastrophe. Social problems include migration from native cities, impact on the education of the sick child along with changes in lives of siblings. One-third of primary caretakers screened positive for anxiety/depression. Healthcare professionals practicing in developing countries face considerable ethical dilemmas in their practice when offering "free" paediatric dialysis services knowing the financial and psychological burden posed to families.

Primary hyperoxaluria and genetic linkages: an insight into the disease burden from Pakistan.

Autosomal recessive disorders are prevalent in Pakistan, a developing South Asian country where consanguineous marriages are common. This study seeks to determine the prevalence of monogenic causes in children presenting with nephrocalcinosis and nephrolithiasis at a dialysis and transplant center in Karachi, Pakistan. A retrospective analysis was conducted in children aged 1-18 years presenting with nephrocalcinosis, between 2010 and 2019. Demographic information, clinical profile, laboratory parameters and stone analysis were collected, on a pre-designed questionnaire. One hundred and twenty-six children were included, with 11 and 3 diagnosed with renal tubular acidosis and Bartter's syndrome respectively. Next-generation sequencing and Sanger sequencing was performed on 112 children. Eighty-seven patients were diagnosed with primary hyperoxaluria, with mutations in alanine-glyoxylate-aminotransferase gene found in 73, followed by glyoxylate reductase/hydroxy-pyruvate reductase in 13, and 4-hydroxy-2-oxaloglutarate aldolase in 1. Twenty-five patients reported negative for mutations. Sixty-four percent were males, with a statistically significant difference (p < 0.05). History of parental consanguineous marriage was found in 98% of the cohort. Fifty-four and 40 patients presented to the clinic with Chronic Kidney Disease Stage 1 and Stage 5, respectively, with a statistically significant difference p = 0.007. Mutations noted in our cohort are different and more severe than those reported in the developed world. The disease poses a major disease burden in developing world context with the only treatment option of combined liver-kidney transplantation not available in Pakistan.

Adapting the ethical review process for COVID-19 research: reviewers' perspectives from Pakistan.

BACKGROUND: Research ethics committees (RECs) globally have adapted their responses to provide timely reviews of research proposals in the wake of the COVID-19 pandemic. The REC of the National Bioethics Committee (NBC) of Pakistan has followed suit. AIMS: To explore perceptions of NBC-REC reviewers who reviewed COVID-19 research proposals while describing the newly instituted Rapid Turnaround Review (RTR) system. METHODS: This cross-sectional study used 3 methods of data collection: a demographic questionnaire filled in by permanent members and co-opted reviewers; qualitative in-depth interviews conducted with both groups; and document review related to COVID-19 research proposals. RESULTS: Eight permanent members and 3 co-opted members participated. Under the RTR system, the time for review was established as 72 hours after receipt of the proposal. The Committee reviewed 55 projects over 10 months. Participants described numerous strengths of the new system, including introduction of online discussions via Zoom as well as presence of co-opted members leading to learning opportunities, particularly for junior members. The RTR system also allowed NBC-REC to gain recognition it had not enjoyed previously. Challenges identified by respondents included initial difficulty in initiating the system and tighter deadlines that may have compromised review quality. Poor scientific quality of proposals, compounded by external pressures to provide rapid approval, added to reviewers' frustrations. While fruitful, the RTR system was considered unsustainable beyond a public health emergency. CONCLUSION: Adaptation of ethical review processes is essential in emergencies, however, existing guidelines have to be modified to suit contextual needs.

Management of maternal depression: Qualitative exploration of perceptions of healthcare professionals from a public tertiary care hospital, Karachi, Pakistan.

The lack of implementation and routine screening of management techniques at tertiary care hospitals leads to an increased burden of maternal depression. The consequences are borne emotionally, physically, and mentally by the mother, the child, the overall family, and society. Hence, it is vital to contextualize this mental disorder to design and implement effective healthcare interventions. The study is aimed to assess the knowledge and practices of healthcare professionals, in a tertiary care setting, who deal with depressive symptoms amongst mothers. It gauges whether a psychological screening criterion is being implemented by the clinical staff during prenatal and postnatal visits to recommend steps that can help develop a service framework. A qualitative, exploratory study design was implemented for this research. With purposive sampling, eight in-depth interviews (three nurses and five doctors) at a single tertiary care hospital were conducted categorically using a semi-structured (open and close-ended questions) interview toolkit. Content Analysis was carried out using information gathered from the unit of analysis. The study provided evidence of the existing gaps in one particular tertiary healthcare system, within Pakistan, concerning diagnosis and management of maternal depression. Results highlighted that providers were well-versed with explanations of maternal depression, the aftermath of it, and the current status of healthcare; however, they were minimally educated about the specifics and levels of treatment. The gathered information assisted in recommending steps to develop a service framework.

Ethical Challenges in Dialysis and Transplantation: Perspectives From the Developing World.

Renal replacement therapies including dialysis and transplantation for patients with end-stage kidney failure are treatment options beyond the reach of a large segment of the population, particularly in resource-constrained settings. Health care professionals practicing within developing countries face unique ethical issues in the provision of these treatment options despite the existence of free treatment at different centers. Apart from issues of accessibility of dialysis services, initiation of treatment can have disastrous consequences for the entire family unit, which is magnified in collectivist societies. Several cost-cutting measures also may have to be used that raise moral dilemmas for physicians. Although transplantation is considered the most cost-effective solution in developing countries, leading to significantly better quality of life, issues of consent from biologically related living donors and the use of marginal donors may place physicians in a quandary. Policy making in developing countries must consider the socioeconomic implications of treatment choices that extend far beyond the treatment cost.

Patient's expectations of privacy and confidentiality in Pakistan: A mixed-methods study.

Privacy and confidentiality are considered a cornerstone in the practice of medical ethics. However, these notions may play out differently in the cultural context of Pakistan. In order to understand the perceptions and expectations of privacy and confidentiality, a cross-sectional mixed method study was undertaken in a tertiary care hospital in Karachi, Pakistan. While the subjects demonstrated unfamiliarity with the Western terms, majority of them also exhibited a high expectation for privacy (both informational and physical) and confidentiality. Patients appeared most comfortable with sharing private medical information with the primary physician, indicating the level of trust placed in the physician. Participants also showed high expectations for confidentiality, thus, even in a collectivist society, patients may not want their private information shared across the medical team and also among family members. The onus is, therefore, on healthcare professionals to assess patients' preferences and choices.

Demystifying the practice of khafd in the Dawoodi Bohra community: A commentary on the WeSpeakOut report from India.

In this commentary, we critique a recent report on female genital cutting (FGC) in the Indian Dawoodi Bohra community titled "The Clitoral hood a contested site: Khafd or female genital mutilation/cutting (FGM/C) in India." Published against the backdrop of possible legislation against FGC in India, the report makes good recommendations and is a useful addition to global literature on FGC. We critique specific sections of the document using relevant literature and informal conversations with the Bohra community in Pakistan, thereby highlighting both its strengths and weaknesses. We also attempt to show that criminalising khafd by conflating it with more drastic forms of cutting may be counterproductive. In conclusion, education and activism from within the community may be more fruitful than the imposition of a law banning khafd.

Why women go to medical college but fail to practise medicine: perspectives from the Islamic Republic of Pakistan.

CONTEXT: Female medical students outnumber men in countries such as Saudi Arabia, India and Pakistan, yet many fail to practise medicine following graduation. In Pakistan, 70% of medical students are women, yet it is estimated that half of them will not pursue medicine following graduation. This is considered a major reason for physician shortages in the country. METHODS: We conducted a qualitative study drawing upon the 'role strain' theory to explore the views of final-year medical students from four medical colleges in Karachi, Pakistan, on female graduates not entering the medical field. Data were obtained through 20 individual in-depth interviews and two focus group discussions. Themes were developed inductively from the data using the constant comparison method. RESULTS: Pakistani parents actively channel daughters into medical education, considering medicine to be the most 'respectable' field. However, in a patrilocal society with norms of early, arranged marriages for daughters, there is a significant influence of in-laws and a husband on a woman's professional future. Parents perceive the medical degree as a 'safety net' should something go wrong with the marriage, rather than a step toward a medical career. Female respondents experience significant role conflict between their socially rooted gender roles as homemakers and mothers and their careers in medicine. Postgraduate training systems that are unfriendly to women provide further deterrents for women wishing to work. Contrary to popular belief, women not practising medicine is not the sole contributor to physician shortages. A significant factor appears to be male graduates migrating abroad for better training and financial prospects. CONCLUSIONS: Acceptance of traditional cultural values, including entrenched gender roles in society, deters women from practising medicine. To enable greater participation of women in the medical field, steps are required that will allow women to better manage family and work conflicts.

Suicide and deliberate self-harm in Pakistan: a scoping review.

BACKGROUND: Suicide is a major global public health problem with more than 800,000 incidents worldwide annually. Seventy-five percent of the global suicides occur in low and middle-income countries (LMICs). Pakistan is a LMIC where information on suicidal behavior is limited. The aim of the review is to map available literature on determinants, risk factors and other variables of suicidal behavior in Pakistan. METHOD: This study was based on Arksey and O'Malley's methodological framework of scoping review, combining peer reviewed publications with grey literature. Ten databases including Applied Social Sciences Index and Abstracts (ASSIA), Cochrane Trials Register (CRG), Cumulative Index to Nursing and Allied Health (CINAHL), National Library of Medicine Gateway (NLMG), ExcerptaMedica (EMBASE), National Library of Medicine's MEDLINE (PUBMED), PSYCHINFO, Social Science Citation Index and Science Citation Index (SCI) and Pakmedinet.com were searched from the beginning of their time frames until December 2016 using a combination of key terms. The inclusion criteria included studies of various study designs covering different aspects of suicidal behavior in English language. RESULTS: Six hundred and twenty three articles were initially retrieved from all ten databases. Two independent reviewers screened the titles and abstracts for relevance. One hundred and eighteen articles were read in full, out of which 11 were excluded because they did not fit the eligibility criteria. One hundred and ten articles, including two student theses and one report, were included in the final review. Most studies were descriptive in nature, with only three that used a case-control design. Majority of the studies were from urban areas, and addressed determinants rather than risk factors. Gender differences and age were predominantly reported, with more males committing suicide. Suicidal behavior was more common among individuals younger than 30 years of age. The three most common methods for suicides were hanging, poisoning and use of firearms. Mental illness as a risk factor for suicides was mentioned in only three studies. CONCLUSIONS: This review is the first attempt to synthesize available literature on suicidal behavior in Pakistan. The evidence is limited, and calls for more robust analytical research designs, along with a focus on risk factors.

Biobanking in the subcontinent: exploring concerns.

Biobanking is an important tool for biomedical research. However, it raises a variety of ethical issues, which are compounded in the developing world. This paper is based on data from three sources on the ethical issues associated with biobanking, including a mixed method pilot study conducted with students in Karachi, Pakistan, a workshop in Karachi, and another workshop held in Bengaluru, India. Findings from these sources reveal a unanimous lack of clarity about what constitutes a biobank. While informed consent was deemed necessary for storage of materials, participants were unsure of how this could be achieved for samples stored indefinitely for future research. Although study participants showed limited understanding of genetic research, concerns were raised in the Karachi workshop. A majority of survey participants found it acceptable to transfer biospecimens across borders, but possibility of misuse was highlighted in both workshops. This paper reveals ambiguities with respect to ethical challenges of biobanking, indicating the need for further discourse.