New advances in genomics changed the research landscape significantly in the last few years. The power and significance of already existing tissue collections is enhanced by their growing size, and all over the world national projects aim to connect with each other at the international level, calling for integrated and common regulations in the transnational research field. The post genomics era faces problems that are partially different from those within the classical bioethical framework. The challenge is to find new ways (...) to deal with regulations in order to facilitate research without frustrating personal rights. Informed Consent has been the center of this wide debate. We propose a model for rethinking consent in an open-time/open-goal framework suitable to genomics research. Consensus becomes more than a single legal step and goes more in the direction of a participated governance mechanism, a circular open process of communication which the IC sheet signature is just one instance of. This approach provides a governance framework based on different levels of consensus and participation that already contains mechanisms to resolve conflicts between different instances and to protect both the interest of research and the rights of participants. (shrink)

Objective: The objectives of this study are to understand the current functions, structure and operation of hospital ethics committees (HECs) in Shanghai and to facilitate their improvement. Methods: (1) A questionnaire survey, (2) interviews with secretaries and (3) on-site document reviews of HECs in Shanghai were used in the study, which surveyed 33 hospitals. Results: In Shanghai, 57.56% of the surveyed hospitals established HECs from 1998 to 2005. Most HECs used bioethical review of research involving human subjects as well as (...) bioethical review or consultation regarding medical care services and administrative decision- making. Of the surveyed HECs, 14.3% did not provide any formal bioethical training to the HECs’ members and many HECs had no standard operating procedures. Some HECs had no clear definition of what was “conflict of interest” that should be considered by the HECs, while 44.4% of the HECs did not perform continuing review. Discussion: After the issues of related national regulations, more and more hospitals established HECs in Shanghai, but the functions of HECs need to be further developed and formal training on bioethics should be provided to HEC members. To assure the independence and good performance of HECs, the conflict of interest procedure, the standard operating procedures and bioethical review should be improved. Conclusion: HECs in Shanghai had developed in the preceding 10 years and they played great roles in protecting the rights and welfare of human subjects and patients; some areas need improvement. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Burma’s Healthcare Under Fire: My Experience as an Exiled Medical ProfessionalP. P. KyawI used to work as a medical doctor in a less developed state than many big cities in Burma1 that experienced prolonged civil wars and current similar atrocities decades before the urban areas of the country experienced them. Before everything started, I was responsible for the medical management of the most vulnerable communities and had been struggling (...) with pandemic-related medical activities. Those were the happiest years of my life. I was with one of the best international organizations, where every effort I made was directly delivered to the patients with no unnecessary paperwork. The system was efficient, my colleagues were supportive, and I had a good work-life balance. I supported my family and whoever needed temporary financial support, played music weekly, met good friends who I hung out with every weekend, and [End Page 164] found hobbies like gardening and crocheting. I was content and happy. I even postponed my plans to get registered as a doctor in the Western world.Before moving to this beautiful ethnic state in 2019, I previously worked as a government medical doctor in Yangon, the capital. As much as I loved working in those civilian hospitals, I could not support myself with a monthly pay of $100-$150 USD. It was a hard decision to leave the service because it meant I could not pursue the medical specialty that I had always longed for and had to leave like-minded supportive colleagues. In Myanmar, unless you are a civil servant, you cannot pursue further clinical specialties. However, after leaving the government’s service to work in humanitarian medical assistance in hard-to-reach areas of Burma, I learned that life is still beautiful outside my comfort zone, until February 2021 when the coup began. Democratically elected members of the country’s ruling party were overthrown by the military, which then bestowed power in a military junta.I expected the election prior to the coup in November 2020 to be an uphill battle for Burma, but nothing more. I was still in denial when I first heard the news from one of the town’s NGO staff. The person had to travel on a motorbike to inform everyone that the junta had staged the coup. No telephone or internet was working at that time. My colleagues and I cried in our office, saying, “We are so young, and the future is still ahead. I don’t think this is going to last long. Maybe it will be over in a few days or, at most, a few weeks.” Once the peaceful protests started nationwide, my friends and I provided medical cover for the protesters, initially for minor medical problems such as low sugar, low blood pressure, injuries from accidental minor slips and falls, etc. Never in my life had I imagined that I would be taking care of bullet wounds and people injured by live rounds. While learning about gunshot wounds in forensic medicine, I thought, “Oh, this is not going to be very useful because Burma is not America, and I am not going there.” Then suddenly, it became too real and more useful than I would’ve liked it to be.I always think back to one especially bloody day when many people in the town were shot with live rounds. We assisted many patients. Usually, we would go around with the protest groups until they were over in the late afternoon. The protesters were always peaceful. There were no riots, no harmful acts, or vandalism. Only when the protesters were cruelly dispersed with tear gas, high-pressure pumps, rubber bullets, and live rounds (to the head) did they decide to defend themselves while still making their voices heard. The only defenses people had to counteract the live rounds were things like metal covers, firecrackers, and slingshots.One afternoon in March 2021, my team and I took an early break for lunch—unaware that some people would lose their lives that afternoon. We followed the local protests through Facebook Live while having lunch and started to hear firecracker sounds. A few seconds later, we knew... (shrink)

It has been argued that the fundamental laws of physics are deceitful in that they give the impression of greater unity and coherence in our theories than is actually found to be the case. Causal stories and phenomenological relationships are claimed to provide a more acceptable account of the world, and only theoretical entities — not laws — are considered as perhaps corresponding to real features of the world.This paper examines these claims in the light of the author's own field (...) of research: high energy physics. Some of the distinctions upon which the above conclusions are based are found not to be tenable in practice. Examples from experimental particle physics are presented which suggest an important role of the underlying theoretical structure which cannot be overlooked. It is argued that the fundamental theories must, in fact, be treated as being as worthy or unworthy of ontological commitment as the entities they postulate or the phenomenological relationships they inspire. Whilst it is conceded that aspects of the current theoretical formalism belie literal interpretation, it is maintained that revision in these particular areas need not affect the symmetry principles, particle spectra, or coupling strengths that largely determine the empirical content of the theory. (shrink)