41 found
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  1.  57
    The birth of the empirical turn in bioethics.Pascal Borry, Paul Schotsmans & Kris Dierickx - 2005 - Bioethics 19 (1):49–71.
    Since its origin, bioethics has attracted the collaboration of few social scientists, and social scientific methods of gathering empirical data have remained unfamiliar to ethicists. Recently, however, the clouded relations between the empirical and normative perspectives on bioethics appear to be changing. Three reasons explain why there was no easy and consistent input of empirical evidence into bioethics. Firstly, interdisciplinary dialogue runs the risk of communication problems and divergent objectives. Secondly, the social sciences were absent partners since the beginning of (...)
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  2.  26
    Sport-related concussion research agenda beyond medical science: culture, ethics, science, policy.Mike McNamee, Lynley C. Anderson, Pascal Borry, Silvia Camporesi, Wayne Derman, Soren Holm, Taryn Rebecca Knox, Bert Leuridan, Sigmund Loland, Francisco Javier Lopez Frias, Ludovica Lorusso, Dominic Malcolm, David McArdle, Brad Partridge, Thomas Schramme & Mike Weed - forthcoming - Journal of Medical Ethics.
    The Concussion in Sport Group guidelines have successfully brought the attention of brain injuries to the global medical and sport research communities, and has significantly impacted brain injury-related practices and rules of international sport. Despite being the global repository of state-of-the-art science, diagnostic tools and guides to clinical practice, the ensuing consensus statements remain the object of ethical and sociocultural criticism. The purpose of this paper is to bring to bear a broad range of multidisciplinary challenges to the processes and (...)
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  3. ‘Nobody tosses a dwarf!’ The relation between the empirical and the normative reexamined.Carlo Leget, Pascal Borry & Raymond de Vries - 2009 - Bioethics 23 (4):226-235.
    This article discusses the relation between empirical and normative approaches in bioethics. The issue of dwarf tossing, while admittedly unusual, is chosen as a point of departure because it challenges the reader to look with fresh eyes upon several central bioethical themes, including human dignity, autonomy, and the protection of vulnerable people. After an overview of current approaches to the integration of empirical and normative ethics, we consider five ways that the empirical and normative can be brought together to speak (...)
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  4.  44
    What is the role of empirical research in bioethical reflection and decision-making? An ethical analysis.Pascal Borry, Paul Schotsmans & Kris Dierickx - 2004 - Medicine, Health Care and Philosophy 7 (1):41-53.
    The field of bioethics is increasingly coming into contact with empirical research findings. In this article, we ask what role empirical research can play in the process of ethical clarification and decision-making. Ethical reflection almost always proceeds in three steps: the description of the moral question,the assessment of the moral question and the evaluation of the decision-making. Empirical research can contribute to each step of this process. In the description of the moral object, first of all, empirical research has a (...)
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  5.  35
    “You hoped we would sleep walk into accepting the collection of our data”: controversies surrounding the UK care.data scheme and their wider relevance for biomedical research.Sigrid Sterckx, Vojin Rakic, Julian Cockbain & Pascal Borry - 2016 - Medicine, Health Care and Philosophy 19 (2):177-190.
    An ‘Information Centre’ has recently been established by law which has the power to collect, collate and provide access to the medical information forall patients treated by the National Health Service in England, whether in hospitals or by General Practitioners. This so-called ‘care.data’ scheme has given rise to major and ongoing controversies. We will sketch the background of the scheme and look at the responses it has elicited from citizens and medical professionals. In Autumn 2013, NHS England set up a (...)
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  6.  39
    What is the role of empirical research in bioethical reflection and decision-making? An ethical analysis.Pascal Borry, Paul Schotsmans & Kris Dierickx - 2004 - Medicine, Health Care and Philosophy 7 (1):41-53.
    The field of bioethics is increasingly coming into contact with empirical research findings. In this article, we ask what role empirical research can play in the process of ethical clarification and decision-making. Ethical reflection almost always proceeds in three steps: the description of the moral question,the assessment of the moral question and the evaluation of the decision-making. Empirical research can contribute to each step of this process. In the description of the moral object, first of all, empirical research has a (...)
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  7.  11
    An Ethical Overview of the CRISPR-Based Elimination of Anopheles gambiae to Combat Malaria.India Jane Wise & Pascal Borry - 2022 - Journal of Bioethical Inquiry 19 (3):371-380.
    Approximately a quarter of a billion people around the world suffer from malaria each year. Most cases are located in sub-Saharan Africa where Anopheles gambiae mosquitoes are the principal vectors of this public health problem. With the use of CRISPR-based gene drives, the population of mosquitoes can be modified, eventually causing their extinction. First, we discuss the moral status of the organism and argue that using genetically modified mosquitoes to combat malaria should not be abandoned based on some moral value (...)
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  8.  54
    Evidence‐based medicine and its role in ethical decision‐making.Pascal Borry, Paul Schotsmans & Kris Dierickx - 2006 - Journal of Evaluation in Clinical Practice 12 (3):306-311.
  9.  30
    Participation of Children in Medical Decision-Making: Challenges and Potential Solutions.Vida Jeremic, Karine Sénécal, Pascal Borry, Davit Chokoshvili & Danya F. Vears - 2016 - Journal of Bioethical Inquiry 13 (4):525-534.
    Participation in healthcare decision-making is considered to be an important right of minors, and is highlighted in both international legislation and public policies. However, despite the legal recognition of children’s rights to participation, and also the benefits that children experience by their involvement, there is evidence that legislation is not always translated into healthcare practice. There are a number of factors that may impact on the ability of the child to be involved in decisions regarding their medical care. Some of (...)
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  10.  23
    Expanded Non-invasive Prenatal Testing (NIPT).Zoë Claesen, Neeltje Crombag, Lidewij Henneman, Joris Robert Vermeesch & Pascal Borry - 2023 - Journal of Bioethical Inquiry 20 (1):41-49.
    Expanded non-invasive prenatal testing (NIPT) has provoked ethical concerns about its justifiable scope. In this paper, we evaluate the role of the child’s right to an open future in setting the scope of NIPT. This ‘open future principle’ has been cited in arguments both limiting and expanding parental freedoms. This moral right holds that adult autonomy rights which children cannot yet exercise should nonetheless be protected until they can. Its purpose is to protect the future autonomy of the child as (...)
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  11.  29
    Polygenic risk scoring of human embryos: a qualitative study of media coverage.Olga Tšuiko, Pascal Borry, Maria Siermann & Tiny Pagnaer - 2021 - BMC Medical Ethics 22 (1):1-8.
    BackgroundCurrent preimplantation genetic testing (PGT) technologies enable embryo genotyping across the whole genome. This has led to the development of polygenic risk scoring of human embryos (PGT-P). Recent implementation of PGT-P, including screening for intelligence, has been extensively covered by media reports, raising major controversy. Considering the increasing demand for assisted reproduction, we evaluated how information about PGT-P is communicated in press media and explored the diversity of ethical themes present in the public debate.MethodsLexisNexis Academic database and Google News were (...)
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  12.  18
    Personalized and long-term electronic informed consent in clinical research: stakeholder views.Isabelle Huys, David Geerts, Pascal Borry & Evelien De Sutter - 2021 - BMC Medical Ethics 22 (1):1-12.
    BackgroundThe landscape of clinical research has evolved over the past decade. With technological advances, the practice of using electronic informed consent (eIC) has emerged. However, a number of challenges hinder the successful and widespread deployment of eIC in clinical research. Therefore, we aimed to investigate the views of various stakeholders on the potential advantages and challenges of eIC.MethodsSemi-structured interviews were conducted with 39 participants from 5 stakeholder groups from across 11 European countries. The stakeholder groups included physicians, patient organization representatives, (...)
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  13.  26
    Author, contributor or just a signer? A quantitative analysis of authorship trends in the field of bioethics.Pascal Borry, Paul Schotsmans & Kris Dierickx - 2006 - Bioethics 20 (4):213–220.
    ABSTRACT Publications are primarily a means of communicating scientific information to colleagues, but they are much more than that. Publications in peer reviewed journals are proof of academic competence, are used as a crucial component in evaluation criteria for academic promotion and fundraising and increase the prestige of research centres and universities. The urgent need for publications has also led to abuses in authorship. In the past the single‐author article was the rule, but over the past decades, the average number (...)
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  14.  18
    On the Epistemic Status of Prenatal Ultrasound: Are Ultrasound Scans Photographic Pictures?Maddalena Favaretto, Danya F. Vears & Pascal Borry - 2020 - Journal of Medicine and Philosophy 45 (2):231-250.
    Medical imaging is predominantly a visual field. In this context, prenatal ultrasound images assume intense social, ethical, and psychological significance by virtue of the subject they represent: the fetus. This feature, along with the sophistication introduced by three-dimensional ultrasound imaging that allows improved visualization of the fetus, has contributed to the common impression that prenatal ultrasound scans are like photographs of the fetus. In this article we discuss the consistency of such a comparison. First, we investigate the epistemic role of (...)
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  15.  1
    Ethical concerns in integrating sport-related concussion (SRC) genetic testing into return-to-play (RTP) protocols.Tatiana Spitsyna & Pascal Borry - forthcoming - Sport, Ethics and Philosophy:1-12.
    The occurrence of sport-related concussions (SRCs) has emerged as a significant health concern in professional sports, with millions of concussions occurring worldwide each year. Current return-to-play (RTP) protocols after SRCs involve a multi-disciplinary approach with growing interest in genetic testing technology. Numerous studies have indicated that the gene Apolipoprotein E4 (APOE4) holds promise as a predictive factor for developing diseases after concussions and other traumatic brain injuries. Nevertheless, there is an ongoing and contentious debate surrounding the impact of SRC genetic (...)
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  16.  41
    Is There a Right Time to Know?: The Right Not to Know and Genetic Testing in Children.Pascal Borry, Mahsa Shabani & Heidi Carmen Howard - 2014 - Journal of Law, Medicine and Ethics 42 (1):19-27.
    The increasing implementation of next-generation sequencing technologies in the clinical context and the expanding commercial offer of genetic tests directly-toconsumers has increased the availability of previously inaccessible genetic information. A particular concern in both situations is how the volume of novel information will affect the processing of genetic and genomic information from minors. For minors, it is argued that in the provision of genetic testing, their “right not to know” should be respected as much as possible. Testing a minor early (...)
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  17.  16
    Is There a Right Time to Know?: The Right Not to Know and Genetic Testing in Children.Pascal Borry, Mahsa Shabani & Heidi Carmen Howard - 2014 - Journal of Law, Medicine and Ethics 42 (1):19-27.
    In the last few decades, great progress has been made in both genetic and genomic research. The development of the Human Genome Project has increased our knowledge of the genetic basis of diseases and has given a tremendous momentum to the development of new technologies that make widespread genetic testing possible and has increased the availability of previously inaccessible genetic information. Two examples of this exponential evolution are the increasing implementation of next-generation sequencing technologies in the clinical context and the (...)
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  18.  40
    Nonpropositional Content in Direct-to-Consumer Genetic Testing Advertisements.Pascal Borry, Mahsa Shabani & Heidi Carmen Howard - 2013 - American Journal of Bioethics 13 (5):14-16.
  19.  27
    Challenges of web-based personal genomic data sharing.Pascal Borry & Mahsa Shabani - 2015 - Life Sciences, Society and Policy 11 (1):1-13.
    In order to study the relationship between genes and diseases, the increasing availability and sharing of phenotypic and genotypic data have been promoted as an imperative within the scientific community. In parallel with data sharing practices by clinicians and researchers, recent initiatives have been observed in which individuals are sharing personal genomic data. The involvement of individuals in such initiatives is facilitated by the increased accessibility of personal genomic data, offered by private test providers along with availability of online networks. (...)
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  20.  24
    Safeguarding Users of Consumer Mental Health Apps in Research and Product Improvement Studies: an Interview Study.Kamiel Verbeke, Charu Jain, Ambra Shpendi & Pascal Borry - 2024 - Neuroethics 17 (1):1-20.
    Mental health-related data generated by app users during the routine use of Consumer Mental Health Apps (CMHAs) are being increasingly leveraged for research and product improvement studies. However, it remains unclear which ethical safeguards and practices should be implemented by researchers and app developers to protect users during these studies, and concerns have been raised over their current implementation in CMHAs. To better understand which ethical safeguards and practices are implemented, why and how, 17 app developers and researchers were interviewed (...)
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  21.  28
    Personal Genome Testing: Do You Know What You Are Buying?Heidi Howard & Pascal Borry - 2009 - American Journal of Bioethics 9 (6-7):11-13.
  22.  31
    Empirical Ethics.Carlo Leget & Pascal Borry - 2010 - Ethical Perspectives 17 (2):231-252.
    The actual rise of empirical contributions in bioethics questions – at a fundamental level – the place bioethics will reserve for empirical approaches in its field. This article aims to discuss the relationship between empirical research and normative evaluations and to apply this to the use of the concept of dignity in end-of-life research.It describes five possible ways in which empirical research can be related to normative ethics: prescriptive applied ethics, theorist ethics, critical applied ethics, particularist ethics and integrated empirical (...)
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  23.  14
    The Landscape of the “Spirit of Sport”: A Systematic Review.Mojisola Obasa & Pascal Borry - 2019 - Journal of Bioethical Inquiry 16 (3):443-453.
    The World Anti-Doping Agency sets out a detailed description of what its own conception of the “spirit of sport” as employed in the World Anti-Doping Code entails. However, controversies as to the significance and meaning to be ascribed to the term abound in the literature. In order to unravel the core of the debates and to move discussions forward, the authors aimed at reviewing understandings of the spirit of sport in the conceptual literature. The main databases were searched using relevant (...)
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  24.  11
    Contact investigation in multidrug-resistant tuberculosis: ethical challenges.Hnin Si Oo & Pascal Borry - forthcoming - Monash Bioethics Review:1-12.
    Contact investigation is an evidence-based intervention of multidrug-resistant tuberculosis (MDR-TB) to protect public health by interrupting the chain of transmission. In pursuit of contact investigation, patients’ MDR-TB status has to be disclosed to third parties (to the minimum necessary) for tracing the contacts. Nevertheless, disclosure to third parties often unintentionally leads the MDR-TB patients suffered from social discrimination and stigma. For this reason, patients are less inclined to reveal their MDR-TB status and becomes a significant issue in contact investigation. This (...)
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  25. The origin and emergence of empirical ethics.Pascal Borry, Paul Schotsmans & Dierickx & Kris - 2008 - In Guy Widdershoven (ed.), Empirical ethics in psychiatry. New York: Oxford University Press.
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  26.  23
    The origin and emergence of empirical ethics.Pascal Borry, Paul Schotsmans & Kris Dierickx - 2008 - In Guy Widdershoven (ed.), Empirical ethics in psychiatry. New York: Oxford University Press. pp. 37--50.
  27.  22
    The social shaping of a diagnosis in Next Generation Sequencing.Janneke M. L. Kuiper, Pascal Borry, Danya F. Vears & Ine Van Hoyweghen - 2021 - New Genetics and Society 40 (4):425-448.
    Although Next Generation Sequencing (NGS) has increased our ability to test and diagnose, its results are often not clear-cut and require a complex interpretation and negotiation process by both healthcare professionals and patients involved. In this paper, we explore how diagnoses identified through NGS are socially shaped under influence of the broader social context. Using an analytical framework stemming from the sociology of health and illness and science and technology studies, with a focus on the construction of diagnosis and the (...)
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  28.  14
    Attitudes and experiences of European clinical geneticists towards direct-to-consumer genetic testing: a qualitative interview study.Louiza Kalokairinou, Pascal Borry & Heidi C. Howard - 2019 - New Genetics and Society 38 (4):410-429.
    Direct-to-consumer (DTC) genetic tests (GT) enable consumers to access a wide range of GT, without involving a healthcare professional, promoting an increasing disassociation of genetics from the clinical context. This study explores, through semi-structured interviews, the experiences and attitudes of European clinical geneticists towards DTCGT. Our results indicate that the participants have limited experience of consultations with patients regarding such tests. The majority of participants stated that consumers purchased tests out of curiosity and sought a general interpretation of test results (...)
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  29.  27
    Bookreviews.P. C. Beentjes, Hans Lammers, R. Bieringer, Martin Parmentier, Bart J. Koet, C. T. M. van Vliet, Rob Faesen, Arie L. Molendijk, Walter Van Herck & Pascal Borry - 2005 - Bijdragen 66 (4):458-471.
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  30.  35
    Dtc genetic services: A look across the pond.Pascal Borry & Heidi Howard - 2008 - American Journal of Bioethics 8 (6):14 – 16.
  31.  11
    Informed consent in children and young people: an introduction.Pascal Borry, Louise Stultiëns, Herman Nys & Kris Dierickx - unknown
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  32.  71
    Moss, Lenny. What genes can't do.Pascal Borry - 2004 - Theoretical Medicine and Bioethics 25 (1):75-77.
  33.  19
    Ethics Review in Anti-Doping Research: Experiences of Stakeholders.Thijs Devriendt, Virginia Sanchini & Pascal Borry - 2020 - AJOB Empirical Bioethics 11 (2):125-133.
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  34.  18
    Pre- and post-testing counseling considerations for the provision of expanded carrier screening: exploration of European geneticists’ views.Sandra Janssens, Davit Chokoshvili, Danya F. Vears, Anne De Paepe & Pascal Borry - 2017 - BMC Medical Ethics 18 (1):46.
    BackgroundCarrier screening is generally performed with the aim of identifying healthy couples at risk of having a child affected with a monogenic disorder to provide them with reproductive options. Expanded carrier screening, which provides the opportunity for multiple conditions to be screened in one test, offers a more cost-effective and comprehensive option than screening for single disorders. However, implementation of ECS at a population level would have implications for genetic counseling practice.MethodsWe conducted semi-structured interviews with sixteen European clinical and molecular (...)
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  35.  12
    Return of Results in Population Studies: How Do Participants Perceive Them?Hélène Nobile, Pascal Borry, Jennifer Moldenhauer & Manuela M. Bergmann - 2021 - Public Health Ethics 14 (1):12-22.
    As a cornerstone of public health, epidemiology has lately undergone substantial changes enabled by, among other factors, the use of biobank infrastructures. In biobank-related research, the return of results to participants constitutes an important and complex ethical question. In this study, we qualitatively investigated how individuals perceive the results returned following their participation in cohort studies with biobanks. In our semi-structured interviews with 31 participants of two such German studies, we observed that some participants overestimate the nature of the personal (...)
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  36.  15
    The Global Kidney Exchange: Revisiting exploitation arguments.Maryn Reyneke & Pascal Borry - 2021 - Developing World Bioethics 22 (1):15-22.
    Developing World Bioethics, Volume 22, Issue 1, Page 15-22, March 2022.
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  37. Promotion and sales of self-tests on the Internet.Elke Sleurs, Louiza Kalokairinou, Heidi Carmen Howard & Pascal Borry - 2014 - In Yann Joly & Bartha Maria Knoppers (eds.), Routledge Handbook of Medical Law and Ethics. New York, NY: Routledge.
  38.  20
    Old Challenges or New Issues? Genetic Health Professionals’ Experiences Obtaining Informed Consent in Diagnostic Genomic Sequencing.Danya F. Vears, Pascal Borry, Julian Savulescu & Julian J. Koplin - 2021 - AJOB Empirical Bioethics 12 (1):12-23.
    Background While integrating genomic sequencing into clinical care carries clear medical benefits, it also raises difficult ethical questions. Compared to traditional sequencing technologies, genomic sequencing and analysis is more likely to identify unsolicited findings (UF) and variants that cannot be classified as benign or disease-causing (variants of uncertain significance; VUS). UF and VUS pose new challenges for genetic health professionals (GHPs) who are obtaining informed consent for genomic sequencing from patients.Methods We conducted semi-structured interviews with 31 GHPs across Europe, Australia (...)
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  39.  23
    Old Challenges or New Issues? Genetic Health Professionals’ Experiences Obtaining Informed Consent in Diagnostic Genomic Sequencing.Danya F. Vears, Pascal Borry, Julian Savulescu & Julian J. Koplin - 2021 - AJOB Empirical Bioethics 12 (1):12-23.
    Background While integrating genomic sequencing into clinical care carries clear medical benefits, it also raises difficult ethical questions. Compared to traditional sequencing technologies, genomic sequencing and analysis is more likely to identify unsolicited findings (UF) and variants that cannot be classified as benign or disease-causing (variants of uncertain significance; VUS). UF and VUS pose new challenges for genetic health professionals (GHPs) who are obtaining informed consent for genomic sequencing from patients.Methods We conducted semi-structured interviews with 31 GHPs across Europe, Australia (...)
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  40.  35
    Donation after Uncontrolled Cardiac Death (uDCD): A Review of the Debate from a European Perspective. [REVIEW]Pascal Borry, Walter Van Reusel, Leo Roels & Paul Schotsmans - 2008 - Journal of Law, Medicine and Ethics 36 (4):752-759.
    Presumed consent alone will not solve the organ shortage, but it will create an ethical and legal context that supports organ donation, respects individuals who object to organ donation, relieves families from the burden of decision making, and can save lives.
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  41.  16
    Donation after Uncontrolled Cardiac Death : A Review of the Debate from a European Perspective. [REVIEW]Pascal Borry, Walter Van Reusel, Leo Roels & Paul Schotsmans - 2008 - Journal of Law, Medicine and Ethics 36 (4):752-759.
    In the early days of organ transplantation from deceased donors, the surgical team would bring the donor into the operating room with the recipient, the respirator would be stopped, and the team would wait for the donor’s heart to cease beating. This type of organ donation has been defined as donation after cardiac death, also referred to as non-heart-beating donation. These donors were not declared dead using neurological criteria, but rather using conventional cardiorespiratory criteria. In 1959, Mollaret and Goulon coined (...)
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