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Intro -- Clinical Ethics at the Crossroads of Genetic and Reproductive Technologies -- Copyright -- Contents -- Contributors -- Chapter 1: Genomic editing: From human health to the ``perfect child´´ -- 1. Introduction -- 1.1. Beginnings -- 1.2. Definitions and context -- 1.3. Recombinant DNA technology: The basis for DNA modification -- 1.4. Genome editing -- 1.4.1. Meganucleases -- 1.5. Zinc finger nucleases (ZFNs) -- 1.5.1. Transcription activator-like nucleases (TALENs) -- 1.6. CRISPR/Cas9 technology -- 1.7. Base editing technology -- 1.8. Principles of using genome editing in research and clinical practice -- 2. Ethical issues in clinical genome editing -- 2.1. Nonmaleficence and risk/benefit assessment -- 2.1.1. Risk-to-benefit analysis -- 2.2. Beneficence in gene editing therapies -- 2.3. Respect for autonomy -- 2.4. Confidentiality -- 2.4.1. Germline editing -- 2.4.2. The He Jiankui affair and the aftermath -- 2.5. Applying the principle of justice in clinical genome editing -- 2.6. Eugenics, enhancement, and ``designer babies´´ -- 3. Conclusions -- References -- Chapter 2: Ethics of mitochondrial gene replacement therapy -- 1. Introduction -- 2. What is mitochondrial disease and mitochondrial donation? -- 3. The UK timeline -- 4. The international position -- 5. Are the techniques safe? -- 6. Ethical issues -- 7. ``Three parent babies´´ and identity -- 8. Genetic modification and the ``slippery slope´´ -- 9. Risks for egg donors -- 10. Ethical differences between PNT and MST -- 11. Mitochondrial disease as complex: Diagnosis, predicting risk, and genetic counseling -- 12. Alternative reproductive options -- 13. Polar body transfer and gene editing -- 14. Conclusion -- References -- Further reading -- Chapter 3: Reproductive technologies used by same-gender couples -- 1. Introduction -- 2. Procreative autonomy.

The purpose of this article is to summarize the way young medical professionals view these modern biomedical procedures and their moral acceptability. Materials and methods: A survey, filled in online, analyzing items in four main areas: genetic techniques, cloning, stem cell research, and assisted reproduction. Results: Most subjects agreed that the right to the genetic material should be a fundamental human right and that genetic engineering should be used if it could lead to the elimination os severe genetic diseases like cystic fibrosis and thalassemia. The least acceptance rate was obtained for techniques that would either change physical traits (like eye or hair color) or augment them. Most subjects agreed that the prenatal screening should be mandatory, and if the screening detects a severe congenital malformation the physician should recommend therapeutic abortion. Most subjects disagreed that cloning of any type, either therapeutic or reproductive, using human, animal, or vegetal genetic material. Most subjects agreed with the collection and storage of cord blood stem cells and the use of adult stem cells, and most of them disagreed with the creation of embryos specifically for obtaining stem cells. Conclusions: Even if the national legislation in this area is very scarce, the responses have usually identified the highly controversial techniques. If however the national legislation has elements similar to the items from the survey, they tended to take the respective items as morally acceptable without trying to analyze them critically. ; El propósito de este artículo es conocer la forma en que jóvenes profesionales médicos ven los procedimientos biomédicos modernos y su aceptabilidad moral. Materiales y métodos: Una encuesta, rellenada online, que analiza elementos en cuatro áreas principales: técnicas genéticas, clonación, investigación con células madre y reproducción asistida. Resultados: La mayoría de los sujetos acepta que el derecho a material genético debería ser un derecho humano fundamental y ...

Abstract Translational research tries to apply findings from basic science to enhance human health and well-being. Many phases of the translational research may include non-medical tasks (information technology, engineering, nanotechnology, biochemistry, animal research, economy, sociology, psychology, politics, and so on). Using common bioethics principles to these areas might sometimes be not feasible, or even impossible. However, the whole process must respect some fundamental, moral principles. The purpose of this paper is to argument the need for a different approach to the morality in translational bioethics, and to suggest some directions that might be followed when constructing such a bioethics. We will show that a new approach is needed and present a few ethical issues that are specific to the translational research.

"Emerging viral or bacterial threats pose significant medical and ethical issues, caused not only by the management of the disease, but also by the uncontrolled dissemination of information, both true and fake. Even the most correct and impartially presented piece of information can be understood by the patients or by the public at large in ways that are opposite to those intended by the communicators. This, associated with the increased prevalence of fake news, may cause havoc and decrease the efficacy of the needed preventive measures that have to be taken to tackle the actual medical problem. Within the context of the coronavirus outbreak, this has been coined as "infodemic", increasing the difficulty of finding an optimal solution to the actual problem. Medical data about an emerging medical threat is disseminated through mass – and social media, especially by public authorities and physicians. The latter have specific duties, appertaining to their professional codes of morals, toward minimizing the harms generated by diseases, both at a personal and at a populational level. In infodemics, the management of the information they present to the public is extremely important, as each wording can be improperly interpreted and cause opposite effects. In this paper, we will discuss whether and which healthcare professionals should be involved in disseminating information about emerging healthcare threats, and which moral duties should prevail in these instances. "

Translational research tries to apply findings from basic science to enhance human health and well-being. Many phases of the translational research may include non-medical tasks (information technology, engineering, nanotechnology, biochemistry, animal research, economy, sociology, psychology, politics, and so on). Using common bioethics principles to these areas might sometimes be not feasible, or even impossible. However, the whole process must respect some fundamental, moral principles. The purpose of this paper is to argument the need for a different approach to the morality in translational bioethics, and to suggest some directions that might be followed when constructing such a bioethics. We will show that a new approach is needed and present a few ethical issues that are specific to the translational research. ; This project has received funding from the European Union's Horizon 2020 research and innovation programme under grant agreement No 643636 "Sound of Vision" for authors SH, AM, RU, OJ. The article was revised by HS while he was a scholar in the Research Ethics Education in the Balkans and Black Sea Countries program, financed by NIH, No 1R25TW008171-01A1. The work has been funded by the Sectoral Operational Programme Human Resources Development 2007–2013 of the Ministry of European Funds through the Financial Agreement POSDRU/159/1.5/S/132397 for author MD. ; Peer Reviewed

To access publisher's full text version of this article, please click on the hyperlink in Additional Links field or click on the hyperlink at the top of the page marked Files. This article is open access. ; Translational research tries to apply findings from basic science to enhance human health and well-being. Many phases of the translational research may include non-medical tasks (information technology, engineering, nanotechnology, biochemistry, animal research, economy, sociology, psychology, politics, and so on). Using common bioethics principles to these areas might sometimes be not feasible, or even impossible. However, the whole process must respect some fundamental, moral principles. The purpose of this paper is to argument the need for a different approach to the morality in translational bioethics, and to suggest some directions that might be followed when constructing such a bioethics. We will show that a new approach is needed and present a few ethical issues that are specific to the translational research. ; info:eu-repo/grantAgreement/EC/FP7/643636 NIH/1R25TW008171-01A1 Sectoral Operational Programme Human Resources Development of the Ministry of European Funds POSDRU/159/1.5/S/132397

"Pharmacogenomics uses a DNA sequence in order to create a "genetic map" that determines which drugs are the most efficient for a specific disease, in a particular patient. The needed information for developing personalized therapies needs, besides genetic data, various non-genetic factors might interfere with some mechanisms of drug action, and they should also be considered. The assumption that the genetic data is more important than any other type of non-genetic medical information may severely alter the reliability of pharmacogenomics. In order to decrease the risk for non-genetic factors to significantly alter the pharmacogenomics-related therapies, patients need to provide detailed information about them. This, however, is often not specifically sought upon by neither the patient (who sees this information as trivial when the physician interacts directly with her/his genes), nor the physician (who is often a genetics/ pharmacogenetics expert, who tends to see the genetic information as supreme). One of the main targets in data management is privacy. A lot of effort is needed to keep the data anonymous and creating a detailed informed consent to determine the patient to acknowledge the risks and the benefits of pharmacogenomics. However, proper management of data also includes obtaining all the relevant information to maximize beneficence, this being especially important in frontier techniques, such as pharmacogenomics. The purpose of this study is to analyze the main ethical issues in data management in pharmacogenomics, with an emphasis on the way the physician-patient relationship should be developed to maximize relevant data extraction and optimize its management. "

"Virtual reality (VR), initially a form of entertainment has begun to find its way in healthcare practice. One of its main areas of interest is the treatment of psychiatric disorders. When using VR, the basic ethical principles underlying the physician-patient relationship should be respected, but they should be customized by the presence of an additional layer of complexity generated by the interposition of the virtual world. The physician-patient relationship is often multidirectional, often including a larger team of healthcare professionals, family members or acquaintances, working conjointly to optimize the medical care. Each time other participants are involved within this relationship, the complexity of the ethical issues tends to increase. For example, if the patient has decreased insight, it is possible that other persons must make some medical decisions – resulting a prioritization of beneficence compared to autonomy. Also, we must take into account the fact that many psychiatric symptoms can be seen as a form of "virtual reality" by the patient. The healthcare provider must take additional safety measures to minimize the harms made by VR techniques in psychiatric patients, by using methods that are individually tailored. The main aim of this paper is to debate the ethical aspects surrounding the applicability of virtual reality in treating psychiatric patients, with an emphasis on the elements that were mentioned earlier. "

"Novel biotechnologies like brain banking pose a challenge in neurodegenerative diseases research, being not only a step towards a better understanding for these diseases, but also from a bioethical point of view. Brain banks collect tissue for research purposes from deceased persons suffering from neurodegenerative diseases such as Parkinson's or Alzheimes's disease. In order to improve the quality in this research field, confidentiality and a detailed informed consent are aspects that should be emphasized. Moreover, given the fact that the brain collecting takes place during an autopsy, legal aspects also play an important role, hence a legal frame is also needed. The role of the deceased's family should also be taken into account, especially when and how they can decide if the autopsy can be performed in the first place. The research participant should sign a detailed informed consent that must remain the research basis to which extent the collected data should be disclosed. Finally, only a framework of bioethical and legal norms can improve the quality of brain banking research. A comprehensive perspective for brain banking from obtaining, processing, and storage of brain material to bioethical and legal aspects should increase the scarce sapling of brain banking. "

Examination of a person who has been a victim of a physical or sexual assault may be very important for upcoming legal proceedings. In the context of a clinical forensic examination, physical findings are recorded and biological trace material is gathered and secured. Ideally, all forensic findings are documented in a detailed report combined with photographic documentation, which employs a forensic scale to depict the size of the injuries. However, the integrity of such forensic findings depends particularly on two factors. First, the examination needs to be conducted professionally to ensure that the findings are properly admissible as court evidence. Second, the examination should take place as soon as possible because the opportunity to successfully secure biological samples declines rapidly with time. Access to low-threshold clinical forensic examinations is not evenly provided in all member states of the European Union (EU); in some states, they are not available at all. As part of the JUSTeU! (Juridical standards for clinical forensic examinations of victims of violence in Europe) project, the Ludwig Boltzmann Institute for Clinical Forensic Imaging in Graz, Austria created (in cooperation with its international partner consortium) a questionnaire: the purpose was to collect information about support for victims of physical and/or sexual assault in obtaining a low-threshold clinical forensic examination in various countries of the EU. Our paper provides a summary of the responses and an overview of the current situation concerning provided clinical forensic services.