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1.
Dev World Bioeth ; 2023 Jul 18.
Artículo en Inglés | MEDLINE | ID: mdl-37462531

RESUMEN

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.

2.
Indian J Med Ethics ; VIII(1): 13-23, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-35695849

RESUMEN

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.


Asunto(s)
Fallo Renal Crónico , Diálisis Renal , Humanos , Niño , Pakistán , Proyectos Piloto , Fallo Renal Crónico/terapia , Composición Familiar
3.
Urolithiasis ; 50(4): 439-445, 2022 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-35678848

RESUMEN

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.


Asunto(s)
Hiperoxaluria Primaria , Hiperoxaluria , Cálculos Renales , Nefrocalcinosis , Niño , Costo de Enfermedad , Femenino , Ligamiento Genético , Humanos , Hiperoxaluria/complicaciones , Hiperoxaluria Primaria/complicaciones , Hiperoxaluria Primaria/epidemiología , Hiperoxaluria Primaria/genética , Cálculos Renales/complicaciones , Masculino , Nefrocalcinosis/epidemiología , Nefrocalcinosis/genética , Pakistán/epidemiología , Estudios Retrospectivos
4.
Semin Nephrol ; 41(3): 211-219, 2021 05.
Artículo en Inglés | MEDLINE | ID: mdl-34330361

RESUMEN

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.


Asunto(s)
Fallo Renal Crónico , Diálisis Renal , Humanos , Fallo Renal Crónico/cirugía , Donadores Vivos , Principios Morales , Calidad de Vida
5.
Indian J Med Ethics ; 4(1): 65-70, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-30473491

RESUMEN

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.


Asunto(s)
Circuncisión Femenina/psicología , Circuncisión Femenina/estadística & datos numéricos , Conocimientos, Actitudes y Práctica en Salud , Política de Salud , Femenino , Humanos , India
6.
Indian J Med Ethics ; 2(4): 248-254, 2017.
Artículo en Inglés | MEDLINE | ID: mdl-28803222

RESUMEN

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.


Asunto(s)
Bancos de Muestras Biológicas/ética , Bancos de Muestras Biológicas/normas , Investigación Biomédica/ética , Confidencialidad/ética , Confidencialidad/normas , Consentimiento Informado/ética , Consentimiento Informado/normas , Investigación Biomédica/normas , Guías como Asunto , Humanos , India , Pakistán , Proyectos Piloto
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