Perspectives from South and East Asia on Clinical and Research Ethics: A Literature Review

Pratt, Bridget; Van, Cassandra; Cong, Yali; Rashid, Harun; Kumar, Nandini; Ahmad, Aasim; Upshur, Ross; Loff, Bebe

doi:10.1525/jer.2014.9.2.52

Cited by 21 publications

(14 citation statements)

References 55 publications

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“…A literature review on South Asian perspectives on clinical and research ethics reported that medical paternalism persists in South Asian society. 49 Recruitment involving senior physicians or researchers through partnerships between hospitals and academic centres is preferred to recruitment by individuals with perceived lesser hierarchical status by South Asians living in the UK. 50 While this dynamic may be beneficial for increasing numbers where physician recruitment is feasible, potential abuse of this power dynamic may be detrimental.…”

Section: Discussionmentioning

confidence: 99%

Barriers and facilitators to recruitment of South Asians to health research: a scoping review

et al. 2017

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ObjectivesPeople of South Asian ethnicity are under-represented in health research studies. The objectives of this scoping review were to examine the barriers and facilitators to recruitment of South Asians to health research studies and to describe strategies for improving recruitment.DesignScoping reviewMethodsUsing the Arksey and O’Malley framework for scoping reviews, we comprehensively searched electronic databases (MEDLINE via PubMed, Cochrane Library, CINAHL and PsycINFO). Studies that identified barriers and facilitators to recruitment, or recruitment strategies for South Asian populations were included. Recruitment barriers, facilitators and strategies were grouped thematically and summarised narratively.SynthesisOf 1846 potentially relevant articles, 15 met the inclusion criteria and were included in the thematic synthesis. Multiple facilitators and barriers to enrolment of South Asians in health research studies were identified; these most commonly related to logistical challenges, language and cultural barriers, concerns about adverse consequences of participating and mistrust of research. Several actionable strategies were discussed, the most common being engagement of South Asian communities, demonstration of cultural competency, provision of incentives and benefits, language sensitivity through the use of translators and translated materials and the development of trust and personal relationships.ConclusionThere is a growing awareness of the barriers and facilitators to recruitment of South Asian participants to health research studies. Knowledge of effective recruitment strategies and implementation during the grant funding stages may reduce the risk of poor recruitment and representation of South Asians.

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Section: Discussionmentioning

confidence: 99%

Barriers and facilitators to recruitment of South Asians to health research: a scoping review

et al. 2017

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“…In the LMIC emergency care setting, it is also particularly important to be aware of the power dynamics between clinicians and patients or their surrogates. The recommendations of clinicians may carry undue weight by virtue of their perceived expertise and authority 40. This influence is likely to be at its greatest when time is short and patients and families are extremely vulnerable and looking for guidance.…”

Section: The Ethics Of Emergency Care Researchmentioning

confidence: 99%

Emergency care research ethics in low-income and middle-income countries

et al. 2019

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A large proportion of the total global burden of disease is caused by emergency medical conditions. Emergency care research is essential to improving emergency medicine but this research can raise some distinctive ethical challenges, especially with regard to (1) standard of care and risk–benefit assessment; (2) blurring of the roles of clinician and researcher; (3) enrolment of populations with intersecting vulnerabilities; (4) fair participant selection; (5) quality of consent; and (6) community engagement. Despite the importance of research to improve emergency care in low-income and middle-income countries (LMICs) and the widely acknowledged ethical challenges, very little has been written on the ethics of emergency care research in LMICs. This paper examines the ethical and regulatory challenges to conducting emergency care research with human participants in LMICs. We outline key challenges, present potential solutions or frameworks for addressing these challenges, and identify gaps. Despite the ethical and regulatory challenges, conducting high-quality, ethical emergency care research in LMICs is possible and it is essential for global health.

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“…This reflexively nudges participants to pay attention to the potential benefits and risks of genetic analysis for their ethnic communities. It is too simplistic to say that ethical decision-making in East Asian countries is more family- or community-centered than Western countries (Akabayashi and Slingsby, 2006; Chen et al, 2013), but it is nevertheless true that family and community considerations are important in clinical practice and research in East Asia (Pratt et al, 2014). Like in Africa (Ramsay et al, 2014), community approval would not supersede individual informed consent in East Asia.…”

Section: Comparative Analysismentioning

confidence: 99%

Social and Communicative Functions of Informed Consent Forms in East Asia and Beyond

Yoshizawa

Sasongko

et al. 2017

Front. Genet.

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The recent research and technology development in medical genomics has raised new issues that are profoundly different from those encountered in traditional clinical research for which informed consent was developed. Global initiatives for international collaboration and public participation in genomics research now face an increasing demand for new forms of informed consent which reflect local contexts. This article analyzes informed consent forms (ICFs) for genomic research formulated by four selected research programs and institutes in East Asia – the Medical Genome Science Program in Japan, Universiti Sains Malaysia Human Research Ethics Committee in Malaysia, and the Taiwan Biobank and the Taipei Medical University- Joint Institutional Review Board in Taiwan. The comparative text analysis highlights East Asian contexts as distinct from other regions by identifying communicative and social functions of consent forms. The communicative functions include re-contact options and offering interactive support for research participants, and setting opportunities for family or community engagement in the consent process. This implies that informed consent cannot be validated solely with the completion of a consent form at the initial stage of the research, and informed consent templates can facilitate interactions between researchers and participants through (even before and after) the research process. The social functions consist of informing participants of possible social risks that include genetic discrimination, sample and data sharing, and highlighting the role of ethics committees. Although international ethics harmonization and the subsequent coordination of consent forms may be necessary to maintain the quality and consistency of consent process for data-intensive international research, it is also worth paying more attention to the local values and different settings that exist where research participants are situated for research in medical genomics. More than simply tools to gain consent from research participants, ICFs function rather as a device of social communication between research communities and civic communities in liaison with intermediary agents like ethics committees, genetic counselors, and public biobanks and databases.

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Perspectives from South and East Asia on Clinical and Research Ethics: A Literature Review

Cited by 21 publications

References 55 publications

Barriers and facilitators to recruitment of South Asians to health research: a scoping review

Barriers and facilitators to recruitment of South Asians to health research: a scoping review

Emergency care research ethics in low-income and middle-income countries

Social and Communicative Functions of Informed Consent Forms in East Asia and Beyond

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