The discovery of clustered regularly interspaced short palindromic repeats (CRISPR) and the CRISPR-mediated protein 9 (CRISPR-Cas9) immediately revealed numerous potential therapeutic applications. Although CRISPR-Cas9 will most likely be useful for addressing issues such as genetic diseases and related medical issues, use of this modality for germline modification generates complex ethical questions regarding the safety and efficacy, human genetic enhancement, and “designer” babies. In this article, the case of the He Jiankui affair is used as an example of the potential for (...) unregulated use of CRISPR-Cas9 technology. In 2018, Dr He Jiankui reported that he had successfully edited human embryos. This work clearly violates all international principles of bioethics. As such, the purpose of this paper is to explore the ethical challenges inherent in the use of CRISPR-Cas9 for human germline editing from the perspectives of the goals of Islamic law (Maqasid al Shari'a) and the major jurisprudential maxims (Qawaid Fiqhiyyah). We argue that from an Islamic standpoint, the therapeutic application of CRISPR-Cas9 for germline editing may be permissible if the safety and efficacy concerns are resolved and if the principles of Maqasid al-Shari'a are fulfilled. (shrink)

BackgroundBioethics as a field related to the health system and health service delivery has grown in the second half of the 20th century, mainly in North America. This is attributed, the author argues, to mainly three kinds of development that took place in the developed countries at a pace different than the developing countries. They are namely: development of the health system; moral development; and political development.DiscussionThis article discusses the factors that impede the development of the field of bioethics from (...) an academic activity to a living field that is known and practiced by the people in the developing countries. They are quite many; however, the emphasis here is on role of the political structure in the developing countries and how it negatively affects the development of bioethics. It presents an argument that if bioethics is to grow within the system of health service, it should be accompanied by a parallel changes in the political mindsets in these countries.SummaryFor bioethics to flourish in developing countries, it needs an atmosphere of freedom where people can practice free moral reasoning and have full potential to take their life decisions by themselves. Moreover, bioethics could be a tool for political change through the empowerment of people, especially the vulnerable.To achieve that, the article is proposing a practical framework for facilitating the development of the field of bioethics in the developing countries. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Full Collection of Personal NarrativesZohar Lederman, Ola Ziara, Rachel Coghlan, Oksana Sulaieva, Anna Shcherbakova, Oleksandr Dudin, Vladyslava Kachkovska, Iryna Dudchenko, Anna Kovchun, Lyudmyla Prystupa, Yuliya Nogovitsyna, Ghaiath Hussein, Kathryn Fausch, P. P. Kyaw, Ayesha Ahmad, Richard W Sams II, Handreen Mohammed Saeed, Artem Riga, Ryan C. Maves, Elizabeth Dotsenko, Irina Deyneka, Eva V. Regel, and Vita Voloshchuk• An Unsettling Affair• How We Keep Caring While Walking Through Our Pain• (...) Adjusting Laboratory Practices to the Challenges of Wartime• Why We Stay• A Semi-Personal Story from a Ukrainian NGO Professional (or a Semi-Professional Story from a Ukrainian Person) Living through the War• When Ethics Survives Where People Do Not: A Story From Darfur• Burma’s Healthcare Under Fire: My Experience as an Exiled Medical Professional• When a Conflict Collapses on a Child: An (Aborted) Medical Evacuation of a Hazara Toddler During the Kabul Airport Blast and the Taliban Takeover• The Vagaries and Vicissitudes of War• Providing Care to a Potential Aggressor: An Ethical Dilemma• One Surgeon’s Experience During Armed Conflict in Ukraine• The Limits of Our Obligations• A Liberating Breath• Soldiers of the Invisible Front: How Ukrainian Therapists Are Fighting for the Mental Health of the Nation Under Fire• Stories of Families with Chronically Ill Pediatric Patients during the War in UkraineCopyright © 2023 Johns Hopkins University Press... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:When Ethics Survives Where People Do Not: A Story From DarfurGhaiath HusseinI was not new to Darfur. I had been here before, although I wore a different hat as I literally walked under the burning April sun along the wide, dusty, unpaved streets of Nyala, South Darfur, to “headquarters.” It was to be another interesting, but normal, peaceful, and safe day as I led the Sudanese household survey in (...) South Darfur, then the largest of all Darfur states. That was in 2006, a few years after I joined the Federal Ministry of Health. My office overlooked the Nile, but getting out of the capital city of Khartoum was always the best part of working there. I had the opportunity to meet real people in their real places, where they are home and at ease.Overall, the data collection team’s work went according to plan. Most of the randomly selected villages were visited as planned or replaced according to protocol. But this morning was anything but normal. A few days earlier, while visiting a village in a nearby town, Kass, my team was able to make a single phone call to us, the leadership [End Page 162] team, composed of two colleagues from Darfur and myself, indicating the team had no reception—the nearest signal was an hour’s drive away. The team leader assured me that they had started collecting data and promised to call every day or every other day. They were a team of six young men and women (I called them boys and girls because they were so young and innocent) between the ages of 20 and 25, all from Darfur. Two of them were in love and participated in the survey collection to save the per diem for their wedding.The time I was expecting their call came, but the call did not come. Then another day, then another, then another.One of the management team was in charge of the security update, and that morning he asked me in a shaky voice if we could have a private meeting as soon as I entered the room. He informed me that the village where my team was located had been attacked by the Janjaweed, the notorious militia known for its ruthless, brutal attacks that leave nothing behind, but men killed indiscriminately, houses and children on fire, and women raped. I recalled my experience in Darfur the year before when I mechanically asked a woman if she had lost a family member in the last six months and what the cause of death was. She burst into tears. I tried to calm her down. Finally, she told me that her few-month-old baby had been burned alive in front of her own eyes. Before I could even imagine the fate of the boys and girls on the team, a call came in. It was not from the team, but from a crying mother who asked me to “bring her daughter back.” She told me she did not want her daughter killed or raped. I cannot remember what I said because I was in shock and did not want anyone to see this, especially the other teams. The last thing I needed was to see the panic for which I was not trained to manage.I had no time to waste. I had no exit or contingency plan in the 224-page survey guide that explained how to collect the data, how to ask the questions, how to sort and safely store the paper questionnaires, how to enter the data. It seemed to provide extensive guidance on everything except for the only instruction I needed at the time—How to keep my teams safe under fire. I took the first flight to the survey’s national headquarters in Khartoum seeking help. I was promised to be put in contact with the intelligence and army in the region through the government agency responsible for organizing humanitarian work in the country. In fact, none of them were in the attacked village. My colleagues on the management team seemed more hardened to the conflict than I was. For me it was something I followed on the news... (shrink)

Armed conflict in Darfur, west Sudan since 2003 has led to the influx of about 100 international humanitarian UN and non-governmental organizations to help the affected population. Many of their humanitarian i...

Armed conflict in Darfur, west Sudan since 2003 has led to the influx of about 100 international humanitarian UN and non-governmental organizations to help the affected population. Many of their humanitarian interventions included the collection of human personal data and/or biosamples, and these activities are often associated with ethical issues. A systematic review was conducted to assess the proportion of publicly available online reports of the research activities undertaken on humans in Darfur between 2004 and 2012 that mention obtaining ethical (...) approval and/or informed consent. This systematic review is based on a systematic literature search of Complex Emergency Database, ReliefWeb, PubMed), followed by a hand search for the hardcopies of the eligible reports archived in the Centre for Research on the Epidemiology of Disasters in Brussels. The online search showed that out of the 68 eligible studies, 13.2% reported gaining ethical approval and 42.6% that an informed consent was obtained from the participants. The CRED search included 138 eligible reports. None of these reports mentioned gaining ethical approval and 17 mentioned obtaining informed consent from their participants. The proportion of studies reporting ethical review and informed consent was smaller than might be expected, so we suggest five possible explanations for these findings. This review provides empirical evidence that can help in planning ethical conduct of research in humanitarian settings. (shrink)