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  3. Approximately 7% of the general population is affected by an orphan disease, which, in the United States, is defined as affecting fewer than 1 in 1500 people. Disease awareness is often low and time-to-diagnos...

    Authors: Konstantin Mechler, Juliane Rausch, William K. Mountford and Markus Ries

    Citation: BMC Medical Ethics 2020 21:20

    Content type: Research article

    Published on:

  5. Internationally, patient access to notes is increasing. This has been driven by respect for patient autonomy, often recognised as a primary tenet of medical ethics: patients should be able to access their reco...

    Authors: Stephanie N. D’Costa, Isla L. Kuhn and Zoë Fritz

    Citation: BMC Medical Ethics 2020 21:18

    Content type: Research article

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  6. Precision medicine (PM) is an emerging approach to individualized care. It aims to help physicians better comprehend and predict the needs of their patients while effectively adopting in a timely manner the mo...

    Authors: Lester Darryl Geneviève, Andrea Martani, David Shaw, Bernice Simone Elger and Tenzin Wangmo

    Citation: BMC Medical Ethics 2020 21:17

    Content type: Debate

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  7. The Ethiopian law on abortion was liberalized in 2005. However, as a strongly religious country, the new law has remained controversial from the outset. Many abortion providers have religious allegiances, whic...

    Authors: Demelash Bezabih Ewnetu, Viva Combs Thorsen, Jan Helge Solbakk and Morten Magelssen

    Citation: BMC Medical Ethics 2020 21:16

    Content type: Research article

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  8. The clinical introduction of non-invasive prenatal testing for fetal aneuploidies is currently transforming the landscape of prenatal screening in many countries. Since it is noninvasive, safe and allows the e...

    Authors: Hazar Haidar, Meredith Vanstone, Anne-Marie Laberge, Gilles Bibeau, Labib Ghulmiyyah and Vardit Ravitsky

    Citation: BMC Medical Ethics 2020 21:15

    Content type: Research article

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  9. Human infection studies (HIS) are valuable in vaccine development. Deliberate infection, however, creates challenging questions, particularly in low and middle-income countries (LMICs) where HIS are new and et...

    Authors: Blessings M. Kapumba, Kondwani Jambo, Jamie Rylance, Markus Gmeiner, Rodrick Sambakunsi, Michael Parker, Stephen B. Gordon and Kate Gooding

    Citation: BMC Medical Ethics 2020 21:14

    Content type: Research article

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  10. When a genetic mutation is identified in a family member (proband), internationally, it is usually the proband’s or another responsible family member’s role to disclose the information to at-risk relatives. Ho...

    Authors: Natalia Meggiolaro, Kristine Barlow-Stewart, Kate Dunlop, Ainsley J. Newson and Jane Fleming

    Citation: BMC Medical Ethics 2020 21:13

    Content type: Research article

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  11. Sharing de-identified individual-level health research data is widely promoted and has many potential benefits. However there are also some potential harms, such as misuse of data and breach of participant con...

    Authors: Phaik Yeong Cheah and Jan Piasecki

    Citation: BMC Medical Ethics 2020 21:12

    Content type: Debate

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  14. Incidental findings (IFs) and secondary findings (SFs), being results that are unrelated to the diagnostic question, are the subject of an important debate in the practice of clinical genomic medicine. Argumen...

    Authors: Marlies Saelaert, Heidi Mertes, Tania Moerenhout, Elfride De Baere and Ignaas Devisch

    Citation: BMC Medical Ethics 2020 21:9

    Content type: Research article

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  15. The progress of electronic health technologies and biobanks holds enormous promise for efficient research. Evidence shows that studies based on sharing and secondary use of data/samples have the potential to s...

    Authors: Lara Bernasconi, Selçuk Şen, Luca Angerame, Apolo P. Balyegisawa, Damien Hong Yew Hui, Maximilian Hotter, Chung Y. Hsu, Tatsuya Ito, Francisca Jörger, Wolfgang Krassnitzer, Adam T. Phillips, Rui Li, Louise Stockley, Fabian Tay, Charlotte von Heijne Widlund, Ming Wan…

    Citation: BMC Medical Ethics 2020 21:8

    Content type: Debate

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  16. As Next Generation Sequencing technologies are increasingly implemented in biomedical research and (translational) care, the number of study participants and patients who ask for release of their genomic raw d...

    Authors: Christoph Schickhardt, Henrike Fleischer and Eva C. Winkler

    Citation: BMC Medical Ethics 2020 21:7

    Content type: Research article

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  18. Ritual circumcision of infant boys is controversial in Norway, as in many other countries. The procedure became a part of Norwegian public health services in 2015. A new law opened for conscientious objection ...

    Authors: Liv Astrid Litleskare, Mette Tolås Strander, Reidun Førde and Morten Magelssen

    Citation: BMC Medical Ethics 2020 21:5

    Content type: Research article

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  19. Within the research community, it is generally accepted that consent processes for research should be culturally appropriate and tailored to the context, yet researchers continue to grapple with what valid con...

    Authors: Jennifer Ilo Van Nuil, Thi Thanh Thuy Nguyen, Thanh Nhan Le Nguyen, Van Vinh Chau Nguyen, Mary Chambers, Thi Dieu Ngan Ta, Laura Merson, Thi Phuong Dung Nguyen, Minh Tu Van Hoang, Michael Parker, Susan Bull and Evelyne Kestelyn

    Citation: BMC Medical Ethics 2020 21:4

    Content type: Research article

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  20. Digital Pills (DP) are an innovative drug-device technology that permits to combine traditional medications with a monitoring system that automatically records data about medication adherence as well as patien...

    Authors: Andrea Martani, Lester Darryl Geneviève, Christopher Poppe, Carlo Casonato and Tenzin Wangmo

    Citation: BMC Medical Ethics 2020 21:3

    Content type: Research article

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  22. In clinical research, obtaining informed consent from participants is an ethical and legal requirement. Conveying the information concerning the study can be done using multiple methods yet this step commonly ...

    Authors: Marta S. Palmeirim, Amanda Ross, Brigit Obrist, Ulfat A. Mohammed, Shaali M. Ame, Said M. Ali and Jennifer Keiser

    Citation: BMC Medical Ethics 2020 21:1

    Content type: Research article

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  24. Medical Assistance in Dying (MAID) in Canada came into effect in 2016 with the passing of Bill C-14. As patient interest and requests for MAID continue to evolve in Canada, it is important to understand the at...

    Authors: Aaron Wong, Amy T. Hsu and Peter Tanuseputro

    Citation: BMC Medical Ethics 2019 20:103

    Content type: Research article

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  25. The ethical principle of justice demands that resources be distributed equally and based on evidence. Guidelines regarding forgoing of CPR are unavailable and there is large variance in the reported rates of a...

    Authors: Janet Ozer, Gadi Alon, Dmitry Leykin, Joseph Varon, Limor Aharonson-Daniel and Sharon Einav

    Citation: BMC Medical Ethics 2019 20:102

    Content type: Research article

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  26. In their letter to the Editor in this issue, Kolstoe and Carpenter challenge a core aspect of our recently published case study of research approvals [BMC Medical Ethics 20:7] by arguing that we conflate resea...

    Authors: Mila Petrova and Stephen Barclay

    Citation: BMC Medical Ethics 2019 20:101

    Content type: Correspondence

    Published on:

    The original article was published in BMC Medical Ethics 2019 20:7

    The Correspondence to this article has been published in BMC Medical Ethics 2019 20:100

    The Correspondence to this article has been published in BMC Medical Ethics 2019 20:100

  27. In their paper “Research approvals iceberg: how a ‘low-key’ study in England needed 89 professionals to approve it and how we can do better” Petrova and Barclay highlight concerns with the health research regu...

    Authors: Simon E. Kolstoe and David Carpenter

    Citation: BMC Medical Ethics 2019 20:100

    Content type: Correspondence

    Published on:

    The original article was published in BMC Medical Ethics 2019 20:7

    The Correspondence to this article has been published in BMC Medical Ethics 2019 20:101

  28. One important ethical issue in randomised controlled trials (RCTs) is randomisation. Relatively little is known about how participating individuals and communities understand and perceive central aspects of ra...

    Authors: Maureen Mupeta Kombe, Joseph Mumba Zulu, Charles Michelo and Ingvild F. Sandøy

    Citation: BMC Medical Ethics 2019 20:99

    Content type: Research article

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  29. Advances in artificial intelligence (AI), robotics and wearable computing are creating novel technological opportunities for mitigating the global burden of population ageing and improving the quality of care ...

    Authors: Tenzin Wangmo, Mirjam Lipps, Reto W. Kressig and Marcello Ienca

    Citation: BMC Medical Ethics 2019 20:98

    Content type: Research article

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  31. Much like academic-industry partnerships, industry financial support of patient advocacy organizations (PAOs) has become very common in recent years. While financial conflicts of interest (FCOI) between PAOs a...

    Authors: Orna Ehrlich, Laura Wingate, Caren Heller and Inmaculada de Melo-Martin

    Citation: BMC Medical Ethics 2019 20:96

    Content type: Debate

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  32. People with lived experience are individuals who have first-hand experience of the medical condition(s) being considered. The value of including the viewpoints of people with lived experience in health policy,...

    Authors: Katherine Rittenbach, Candice G. Horne, Terence O’Riordan, Allison Bichel, Nicholas Mitchell, Adriana M. Fernandez Parra and Frank P. MacMaster

    Citation: BMC Medical Ethics 2019 20:95

    Content type: Debate

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  33. Ethical considerations play a prominent role in the protection of human subjects in clinical research. To date the disclosure of ethical protection in clinical research published in the international nursing j...

    Authors: Yanni Wu, Michelle Howarth, Chunlan Zhou, Mingyu Hu and Weilian Cong

    Citation: BMC Medical Ethics 2019 20:94

    Content type: Research article

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  34. Physicians play a fundamental role in the care of patients at the end of life that includes knowing how to accompany patients, alleviate their suffering and inform them about their situation. However, in reali...

    Authors: Asunción Álvarez-del-Río, Edwin Ortega-García, Luis Oñate-Ocaña and Ingrid Vargas-Huicochea

    Citation: BMC Medical Ethics 2019 20:93

    Content type: Research article

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  35. Individual physicians and physician-associated factors may influence patients’/surrogates’ autonomous decision-making, thus influencing the practice of do-not-resuscitate (DNR) orders. The objective of this st...

    Authors: Yen-Yuan Chen, Melany Su, Shu-Chien Huang, Tzong-Shinn Chu, Ming-Tsan Lin, Yu-Chun Chiu and Kuan-Han Lin

    Citation: BMC Medical Ethics 2019 20:92

    Content type: Research article

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  36. Reasonable disagreement about the role awarded to gamete donors in decision-making on the use of embryos created by gamete donation (EGDs) for research purposes emphasises the importance of considering the imp...

    Authors: I. Baía, C. de Freitas, C. Samorinha, V. Provoost and S. Silva

    Citation: BMC Medical Ethics 2019 20:90

    Content type: Research article

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  38. Prehospital ambulance based research has unique ethical considerations due to urgency, time limitations and the locations involved. We sought to explore these issues through interviews with experts in this res...

    Authors: Stephanie Armstrong, Adele Langlois, Niroshan Siriwardena and Tom Quinn

    Citation: BMC Medical Ethics 2019 20:88

    Content type: Research article

    Published on:

  41. Past studies emphasized the possible cultural influence on attitudes regarding reprogenetics and reproductive risks among medical students who are taken to be “future physicians.” These studies were crafted in...

    Authors: Miriam Ethel Bentwich, Michal Mashiach-Eizenberg, Ana Borovečki and Frida Simonstein

    Citation: BMC Medical Ethics 2019 20:85

    Content type: Research article

    Published on:

  42. Citizen science is increasingly prevalent in the biomedical sciences, including the field of human genomics. Genomic citizen science initiatives present new opportunities to engage individuals in scientific di...

    Authors: Christi J. Guerrini, Meaganne Lewellyn, Mary A. Majumder, Meredith Trejo, Isabel Canfield and Amy L. McGuire

    Citation: BMC Medical Ethics 2019 20:84

    Content type: Research article

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  43. Recent scientific advances in the field of gene editing have led to a renewed discussion on the moral acceptability of human germline modifications. Gene editing methods can be used on human embryos and gamete...

    Authors: Alix Lenia v. Hammerstein, Matthias Eggel and Nikola Biller-Andorno

    Citation: BMC Medical Ethics 2019 20:83

    Content type: Debate

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  44. Compensating participants of biomedical research is a common practice. However, its proximity with ethical concerns of coercion, undue influence, and exploitation, demand that participant compensation be regul...

    Authors: Wongani Nyangulu, Randy Mungwira, Nginanche Nampota, Osward Nyirenda, Lufina Tsirizani, Edson Mwinjiwa and Titus Divala

    Citation: BMC Medical Ethics 2019 20:82

    Content type: Debate

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  45. In the last years, there has been an increase in publication of systematic reviews of normative (“argument-based”) literature or of normative information (such as ethical issues) in bioethics. The aim of a sys...

    Authors: Marcel Mertz

    Citation: BMC Medical Ethics 2019 20:81

    Content type: Debate

    Published on:

  46. Since 2010 the People’s Republic of China has been engaged in an effort to reform its system of organ transplantation by developing a voluntary organ donation and allocation infrastructure. This has required a...

    Authors: Matthew P. Robertson, Raymond L. Hinde and Jacob Lavee

    Citation: BMC Medical Ethics 2019 20:79

    Content type: Research article

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  47. Patients with unmet medical needs sometimes resort to non-standard treatment options, including the use of unapproved, investigational drugs in the context of clinical trials, compassionate use or named-patien...

    Authors: Eline M. Bunnik and Nikkie Aarts

    Citation: BMC Medical Ethics 2019 20:80

    Content type: Research article

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  48. Various forms of Clinical Ethics Support (CES) have been developed in health care organizations. Over the past years, increasing attention has been paid to the question of how to foster the quality of ethics s...

    Authors: Eva M. Van Baarle, Marieke C. Potma, Maria E. C. van Hoek, Laura A. Hartman, Bert A. C. Molewijk and Jelle L. P. van Gurp

    Citation: BMC Medical Ethics 2019 20:78

    Content type: Research article

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  49. There is little dispute that the ideal moral standard for surgical informed consent calls for surgeons to carry out a disclosure dialogue with patients before they sign the informed consent form. This narrativ...

    Authors: Gillie Gabay and Yaarit Bokek-Cohen

    Citation: BMC Medical Ethics 2019 20:77

    Content type: Research article

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  50. Respect for autonomy is a key concept in contemporary bioethics and end-of-life ethics in particular. Despite this status, an individualistic interpretation of autonomy is being challenged from the perspective...

    Authors: Carlos Gómez-Vírseda, Yves de Maeseneer and Chris Gastmans

    Citation: BMC Medical Ethics 2019 20:76

    Content type: Research article

    Published on:

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