Iranome: A catalogue of genomic variations in the Iranian population

Considering the application of human genome variation databases in precision medicine, population-specific genome projects are continuously being developed. However, the Middle Eastern population is underrepresented in current databases. Accordingly, we established Iranome database (www.iranome.com) by performing whole exome sequencing on 800 individuals from eight major Iranian ethnic groups representing the second largest population of Middle East. We identified 1,575,702 variants of which 308,311 were novel (19.6%). Also, by presenting higher frequency for 37,384 novel or known rare variants, Iranome database can improve the power of molecular diagnosis. Moreover, attainable clinical information makes this database a good resource for classifying pathogenicity of rare variants. Principal components analysis indicated that, apart from Iranian-Baluchs, Iranian-Turkmen, and Iranian-Persian Gulf Islanders, who form their own clusters, rest of the population were genetically linked, forming a super-population. Furthermore, only 0.6% of novel variants showed counterparts in "Greater Middle East Variome Project", emphasizing the value of Iranome at national level by releasing a comprehensive catalog of Iranian genomic variations and also filling another gap in the catalog of human genome variations at international level. We introduce Iranome as a resource which may also be applicable in other countries located in neighboring regions historically called Greater Iran (Persia)

Developing "Code of Ethics for Medical Professionals, Medical Council of Islamic Republic of Iran"

Background: The medical profession has always been an inspiration for human societies throughout its diverse history. This position and historical authority in the field of ethics has had a different and higher status, in such a way that many of the norms of general ethics and professional ethics, especially principles, such as trust, confidentiality and respect for human dignity, have been developed by medical professionals. Developing guidelines of general and professional ethics is one of the inherent duties of the Medical Council of the Islamic Republic of Iran (IRIMC) as a professional organization. In this regard, the Supreme Council of IRIMC has approved the "Code of Ethics for Medical Professionals"and, in accordance with its legal authority, has annexed it to the disciplinary regulations of IRIMC. Methods: A draft document, the result of extensive literature review, was discussed in 27 expert panel meetings and after receiving and endorsing the stakeholders' point of view, was approved by the IRIMC Supreme Council. Results: The first edition of "Code of Ethics for Medical Professionals, Medical Council of Islamic Republic of Iran"was developed on July 6, 2017 by the Supreme Council of IRIMC. The guideline was set to take effect one year after its enactment. The first edition was revised and completed and final edition was adopted on August 9, 2018 by IRIMC in 13 chapters and 140 articles (original full text is available in the Supplementary file 1). Conclusion: According to the approved decision by the Supreme Council of IRIMC on May 10, 2018, the final edition takes effect as of October 7, 2018. © 2020 The Author(s)

Realization of Patient Right Dimensions from the Viewpoint of Nurses, Doctors and Patients Hospitalized in Selected Departments of Shariati Hospital, Tehran University of Medical Sciences

Background and Objective: Respecting the patient's rights is one of the most important components of providing humanistic care and a priority in the field of medical ethics in Iran. Therefore, the charter of patients' rights in Iran was announced in 2009 as a practice guide in this field. This study was conducted with the aim of investigating the realization of patient rights from the viewpoint of doctors, nurses and patients hospitalized in selected departments of Shariati Hospital affiliated to Tehran University of Medical Sciences. Methods: This cross-sectional study was conducted in Tehran in 2016-2017 on 487 participants who were selected by convenience sampling method. The data collection tool was the questionnaire of patients' rights awareness. The scores obtained were based on the individual's point of view regarding the observance of the right in question and ranged from 1 (not observed at all) to 5 (completely observed). Findings: Based on the results of this study, doctors and nurses have reported less realization of patients' rights compared to patients. Patients, nurses and doctors, respectively, agree with the greater realization of patient rights in the areas of observance of justice (4.54±0.96), being polite to the patient (4.17±0.90), and quality of service in a scientific sense (3.37±0.85). In addition, patients reported less realization of patients' right in the areas of responsibility and accountability (3.03±1.59) (p=0.000), and nurses and doctors reported less realization of patients' rights in the areas of attention to the patient's well-being and comfort (3.45±0.99) and (2.48±0.84) (p=0.000). Conclusion: The findings of the study showed that, in general, the attitude of the patients indicated that the patient's rights were better fulfilled compared to the doctors and nurses. of course, the views of service receivers and service providers were different regarding the degree of compliance with different dimensions of patient rights in the hospital, and it is necessary to prioritize the views of patients as service receivers and main beneficiaries in the interventions, and the service providers should be informed about it and the solutions to solve the existing shortcomings should be identified and appropriate action should be taken to solve them

Governing the Access to COVID-19 Tools Accelerator: towards greater participation, transparency, and accountability

The Access to COVID-19 Tools Accelerator (ACT-A) is a multistakeholder initiative quickly constructed in the early months of the COVID-19 pandemic to respond to a catastrophic breakdown in global cooperation. ACT-A is now the largest international effort to achieve equitable access to COVID-19 health technologies, and its governance is a matter of broad public importance. We traced the evolution of ACT-A's governance through publicly available documents and analysed it against three principles embedded in the founding mission statement of ACT-A: participation, transparency, and accountability. We found three challenges to realising these principles. First, the roles of the various organisations in ACT-A decision making are unclear, obscuring who might be accountable to whom and for what. Second, the absence of a clearly defined decision making body; ACT-A instead has multiple centres of legally binding decision making and uneven arrangements for information transparency, inhibiting meaningful participation. Third, the nearly indiscernible role of governments in ACT-A, raising key questions about political legitimacy and channels for public accountability. With global public health and billions in public funding at stake, short-term improvements to governance arrangements can and should now be made. Efforts to strengthen pandemic preparedness for the future require attention to ethical, legitimate arrangements for governance

Governing the Access to COVID-19 Tools Accelerator: towards greater participation, transparency, and accountability

10.1016/S0140-6736(21)02344-8The Lancet39910323487-49

SARS-Cov-2 and COVID-19, Basic and Clinical Aspects of the Human Pandemic: A Review

In the last two decades, we have witnessed three major epidemics of the coronavirus human disease namely, severe acute respiratory syndrome (SARS), Middle Eastern respiratory syndrome, and more recently an ongoing global pandemic of coronavirus disease 2019 (COVID-19). Iran, a country of nearly 84 million, in the Middle East, severely involved with the COVID-19 disease. A documented multidimensional approach to COVID-19 disease is therefore mandatory to provide a well-balanced platform for the concerned medical community in our county and beyond. In this review, we highlight the disease status in Iran and attempt to provide a multilateral view of the fundamental and clinical aspects of the disease including the clinical features of the confirmed cases, virology, pathogenesis, epidemiology, and laboratory methods needed for diagnosis

Distinct genetic variation and heterogeneity of the Iranian population

Iran, despite its size, geographic location and past cultural influence, has largely been a blind spot for human population genetic studies. With only sparse genetic information on the Iranian population available, we pursued its genome-wide and geographic characterization based on 1021 samples from eleven ethnic groups. We show that Iranians, while close to neighboring populations, present distinct genetic variation consistent with long-standing genetic continuity, harbor high heterogeneity and different levels of consanguinity, fall apart into a cluster of similar groups and several admixed ones and have experienced numerous language adoption events in the past. Our findings render Iran an important source for human genetic variation in Western and Central Asia, will guide adequate study sampling and assist the interpretation of putative disease-implicated genetic variation. Given Iran�s internal genetic heterogeneity, future studies will have to consider ethnic affiliations and possible admixture. © 2019 Mehrjoo et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited

Ethics preparedness : facilitating ethics review during outbreaks : recommendations from an expert panel

BackgroundEnsuring that countries have adequate research capacities is essential for an effective and efficient response to infectious disease outbreaks. The need for ethical principles and values embodied in international research ethics guidelines to be upheld during public health emergencies is widely recognized. Public health officials, researchers and other concerned stakeholders also have to carefully balance time and resources allocated to immediate treatment and control activities, with an approach that integrates research as part of the outbreak response. Under such circumstances, research ethics preparedness constitutes an important foundation for an effective response to infectious disease outbreaks and other health emergencies.Main textA two-day workshop was convened in March 2018 by the World Health Organisation Global Health Ethics Team and the African coaLition for Epidemic Research, Response and Training, with representatives of National Ethics Committees, to identify practical processes and procedures related to ethics review preparedness. The workshop considered five areas where work might be undertaken to facilitate rapid and sound ethics review: preparing national ethics committees for outbreak response; pre-review of protocols; multi-country review; coordination between national ethics committees and other key stakeholders; data and benefit sharing; and export of samples to third countries.In this paper, we present the recommendations that resulted from the workshop. In particular, the participants recommended that Ethics Committees would develop a formal national standard operating procedure for emergency response ethical review; that there is a need to clarify the terminology and expectations of pre-review of generic protocols and agree upon specific terminology; that there is a need to explore mechanisms for multi-country emergency ethical consultation, and to establish procedures for communication between national ethics committees and other oversight bodies and public health authorities. In addition, it was suggested that ethics committees should request from researchers, at a minimum, a preliminary data sharing and sample sharing plan that outlines the benefit to the population from which data and samples are to be drawn. This should be followed in due time by a full plan.ConclusionIt is hoped that the national ethics committees, supported by the WHO, relevant collaborative research consortia and external funding agencies, will work towards bringing these recommendations into practice, for supporting the conduct of effective research during outbreaks