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Journal of Bioethical Inquiry

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https://www.readbyqxmd.com/read/29234993/narrative-identity-in-third-party-reproduction-normative-aspects-and-ethical-challenges
#1
Natacha Salomé Lima
In the last few decades, assisted reproduction has introduced new challenges to the way people conceive and build their families. While the numbers of donor-conceived (DC) individuals have increased worldwide, there are still many controversies concerning access to donor information. Is there a fundamental moral right to know one's genetic background? What does identity in DC families mean? Is there any relationship between identity formation and disclosure of genetic origins? These questions are addressed by analysing core regulatory discourse (ethical recommendations and codes of practice)...
December 12, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29234992/beyond-trust-plagiarism-and-truth
#2
Bart Penders
Academic misconduct distorts the relationship between scientific practice and the knowledge it produces. The relationship between science and the knowledge it produces is, however, not something universally agreed upon. In this paper I will critically discuss the moral status of an act of research misconduct, namely plagiarism, in the context of different epistemological positions. While from a positivist view of science, plagiarism only influences trust in science but not the content of the scientific corpus, from a constructivist point of view both are at stake...
December 12, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29230700/disclosure-is-inadequate-as-a-solution-to-managing-conflicts-of-interest-in-human-research
#3
Helene Jacmon
Disclosure is a common response to conflicts of interest; it is intended to expose the conflict to scrutiny and enable it to be appropriately managed. For disclosure to be effective the receiver of the disclosure needs to be able to use the information to assess how the conflict may impact on their interests and then implement a suitable response. The act of disclosure also creates an expectation of self-regulation, as the person with the conflicting interests will be mindful of their own potential biases and aware that their decisions may be monitored...
December 11, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29230699/predictive-psychiatric-genetic-testing-in-minors-an-exploration-of-the-non-medical-benefits
#4
Arianna Manzini, Danya F Vears
Predictive genetic testing for susceptibility to psychiatric conditions is likely to become part of standard practice. Because the onset of most psychiatric diseases is in late adolescence or early adulthood, testing minors could lead to early identification that may prevent or delay the development of these disorders. However, due to their complex aetiology, psychiatric genetic testing does not provide the immediate medical benefits that current guidelines require for testing minors. While several authors have argued non-medical benefits may play a crucial role in favour of predictive testing for other conditions, little research has explored such a role in psychiatric disorders...
December 11, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29230698/mode-2-knowledge-production-in-the-context-of-medical-research-a-call-for-further-clarifications
#5
Hojjat Soofi
The traditional researcher-driven environment of medical knowledge production is losing its dominance with the expansion of, for instance, community-based participatory or participant-led medical research. Over the past few decades, sociologists of science have debated a shift in the production of knowledge from traditional discipline-based (Mode 1) to more socially embedded and transdisciplinary frameworks (Mode 2). Recently, scholars have tried to show the relevance of Mode 2 knowledge production to medical research...
December 11, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29230697/knowing-anticipating-even-facilitating-but-still-not-intending-another-challenge-to-double-effect-reasoning
#6
S Duckett
A recent administrative law decision in Victoria, Australia, applied double effect reasoning in a novel way. Double effect reasoning has hitherto been used to legitimate treatments which may shorten life but where the intent of treatment is pain relief. The situation reviewed by the Victorian tribunal went further, supporting actions where a doctor agrees to provide pentobarbitone (Nembutal) to a patient at some time in the future if the patient feels at that time that his pain is unbearable and he wants to end his life...
December 11, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29230696/an-exploration-of-the-protective-effects-of-investigators-ethical-awareness-upon-subjects-of-drug-clinical-trials-in-china
#7
L Zhang, X X Huang, H F Chen
Up till now, China has not enacted any legal mechanisms governing certification or supervision for ethics committees. This article analyses deficiencies in the protection of subjects in clinical drug trials under China's current laws and regulations; it emphasizes that investigators, as practitioners who have direct contact with subjects, play significant roles in protecting and safeguarding subjects' rights and interests. The paper compares the status quo in China in this area to that of other countries and discusses ways China might enhance the protection of rights and interests of trial subjects, such as enhancing the ethical awareness of investigators through training, improving laws and regulations, and strengthening the communication between investigators and ethics committees...
December 11, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29222742/protecting-participants-in-thought-experiments-the-role-of-the-research-ethics-committee
#8
EDITORIAL
David Shaw
No abstract text is available yet for this article.
December 8, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29196966/controlling-futures-online-genetic-testing-and-neurodegenerative-disease-comment-on-personal-genomic-testing-genetic-inheritance-and-uncertainty
#9
Narelle Warren, John Gardner
Online personalized genetic testing services offer accessible and convenient options for satisfying personal curiosity about health and obtaining answers about one's genetic provenance. They are especially attractive to healthy people who wish to learn about their future risk of disease, as Paul Mason's (2017) case study of "Jordan" illustrates. In this response, we consider how online genetic testing services are used by people diagnosed with a common neurodegenerative disease, Parkinson's disease, to gain a sense of certainty regarding the future...
December 1, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29159446/reflecting-before-testing-comment-on-personal-genomic-testing-genetic-inheritance-and-uncertainty
#10
Jacqueline Savard
This response is a comment on the case of Jordan presented by Mason (2017). A key perspective we can take from this case is a consideration of: consumer motivations for testing, whether they have enough information and time to make a decision, and if the test they seek is entirely appropriate for them at their current stage of life.
November 20, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29143188/power-to-the-people
#11
EDITORIAL
Michael A Ashby, Bronwen Morrell
No abstract text is available yet for this article.
November 15, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29134551/the-dangers-of-direct-to-consumer-genetic%C3%A2-testing%C3%A2-for-alzheimer-s-disease-comment-on-personal-genomic-testing-genetic-inheritance-and-uncertainty
#12
Paul Lacaze, Jane Tiller, Joanne Ryan
The overarching issue with this case study is poor regulation and quality control over direct-to-consumer genetic testing, delivered in the absence of any medical oversight.
November 13, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29119461/the-future-emerges-from-the-past-comment-on-personal-genomic-testing-genetic-inheritance-and-uncertainty
#13
Shaun Halovic
The case of Jordan (Mason 2017) highlights the gamble of connecting with the past through genomic testing. Unfortunately for Jordan, his genomic testing identified two variant genes which account for up to 75 per cent of early-onset Alzheimer's disease cases. Furthermore, his children were identified as having a 50 per cent risk of inheriting the gene which corresponds to the majority of early-onset Alzheimer's disease cases. Now Jordan is not only burdened with the foreknowledge that he will most likely develop Alzheimer's disease at a relatively young age but also burdened with the knowledge that his children may share his fate...
November 8, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29119460/personal-genomic-testing-genetic-inheritance-and-uncertainty
#14
Paul H Mason
The case outlined below is the basis for the In That Case section of the "Ethics and Epistemology of Big Data" symposium. Jordan receives reports from two separate personal genomic tests that provide intriguing data about ancestry and worrying but ambiguous data about the potential risk of developing Alzheimer's disease. What began as a personal curiosity about genetic inheritance turns into an alarming situation of medical uncertainty. Questions about Jordan's family tree are overshadowed by even more questions about Alzheimer's disease and healthy ageing...
November 8, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29119459/ethics-and-epistemology-of-big-data
#15
Wendy Lipworth, Paul H Mason, Ian Kerridge
In this Symposium on the Ethics and Epistemology of Big Data, we present four perspectives on the ways in which the rapid growth in size of research databanks-i.e. their shift into the realm of "big data"-has changed their moral, socio-political, and epistemic status. While there is clearly something different about "big data" databanks, we encourage readers to place the arguments presented in this Symposium in the context of longstanding debates about the ethics, politics, and epistemology of biobank, database, genetic, and epidemiological research...
November 8, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29110172/when-doctors-and-parents-don-t-agree-the-story-of-charlie-gard
#16
Natasha Hammond-Browning
This discussion follows a series of high profile cases involving a terminally ill child, Charlie Gard. These cases are significant as they trace the complexities that arise when parents and medical teams do not agree as well as addressing the question of whether there is a right to access experimental treatment.
November 6, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29022226/parents-and-physicians-perceptions-of-children-s-participation-in-decision-making-in-paediatric-oncology-a-quantitative-study
#17
Michael Rost, Tenzin Wangmo, Felix Niggli, Karin Hartmann, Heinz Hengartner, Marc Ansari, Pierluigi Brazzola, Johannes Rischewski, Maja Beck-Popovic, Thomas Kühne, Bernice S Elger
The goal is to present how shared decision-making in paediatric oncology occurs from the viewpoints of parents and physicians. Eight Swiss Pediatric Oncology Group centres participated in this prospective study. The sample comprised a parent and physician of the minor patient (<18 years). Surveys were statistically analysed by comparing physicians' and parents' perspectives and by evaluating factors associated with children's actual involvement. Perspectives of ninety-one parents and twenty physicians were obtained for 151 children...
October 11, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29022172/the-president-s-physician-an-african-play-emmanuel-babatunde-omobowale-2004-all-saints-publishers-ibadan-978-978-37727-3-1-77-pp
#18
Joseph Ajagunmolu Mayaki
This review examines issues relating to biomedical ethics and literature in the African drama The President's Physician by Emmanuel Babatunde Omobowale. The play investigates the psychological dilemma of Doctor Bituki Warunga, a personal physician to General Kalunga Ntibantunganyah who brutally and inhumanely rules Wavaria, a fictional African country. The doctor is faced with deciding to uphold the ethics of his profession versus terminating the tyrant's life to set the nation free. The play aims to help budding medical doctors rightly inculcate the principles of medical ethics-autonomy, beneficence, competence, and power-by providing a fictional platform to investigate difficult issues that can arise in clinical practice...
October 11, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/28988327/the-ethics-of-biomedical-big-data-brent-daniel-mittelstadt-and-luciano-floridi-eds-2016-springer-international-publishing-cham-switzerland-978-3-319-33523-0-480-pp
#19
Paul H Mason
The availability of diverse sources of data related to health and illness from various types of modern communication technology presents the possibility of augmenting medical knowledge, clinical care, and the patient experience. New forms of data collection and analysis will undoubtedly transform epidemiology, public health, and clinical practice, but what ethical considerations come in to play? With a view to analysing the ethical and regulatory dimensions of burgeoning forms of biomedical big data, Brent Daniel Mittelstadt and Luciano Floridi have brought together thirty scholars in an edited volume that forms part of Springer's Law, Governance and Technology book series in a collection titled The Ethics of Biomedical Big Data...
October 7, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/28983861/the-issues-of-freedom-and-happiness-in-moral-bioenhancement-continuing-the-debate-with-a-reply-to-harris-wiseman
#20
Vojin Rakić
During the previous years, Harris Wiseman has devoted substantial attention to my stance on voluntary moral bioenhancement. He argued that he has been influenced by that position, but nonetheless criticized it. I haven't replied to his criticisms yet and wish to do so now. One of the reasons is to avoid my position being misrepresented. By replying to Wiseman's criticisms, I also wish to clarify those issues in my standpoint that might have given rise to some of the misinterpretations. With the same purpose in mind, I will demarcate my concept of voluntary moral bioenhancement from related standpoints, in particular from Persson and Savulescu's notion of compulsory moral bioenhancement that, as I argued, diminishes our freedom (of the will)...
October 5, 2017: Journal of Bioethical Inquiry
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