Bioethics and medical/legal considerations on cochlear implants in children

Cochlear implants are the best treatment for congenital profound deafness. Pediatric candidates to implantation are seen as vulnerable citizens, and the decision of implanting cochlear devices is ultimately in the hands of their parents/guardians. The Brazilian Penal Code dictates that deaf people may enjoy diminished criminal capacity. Many are the bioethical controversies around cochlear implants, as representatives from the deaf community have seen in them a means of decimating their culture and intrinsic values. Objective: This paper aims to discuss, in bioethical terms, the validity of implanting cochlear hearing aids in children by analyzing their vulnerability and the social/cultural implications of the procedure itself, aside from looking into the medical/legal aspects connected to their criminal capacity. Materials and Methods: The topic was searched on databases Medline and Lilacs; ethical analysis was done based on principialist bioethics. Results: Cochlear implants are the best therapeutic option for people with profound deafness and are morally justified. The level of criminal capacity attributed to deaf people requires careful analysis of the subject's degree of understanding and determination when carrying out the acts for which he/she has been charged. Conclusion: Cochlear implants are morally valid. Implantations must be analyzed on an each case basis. ENT physicians bear the ethical responsibility for indicating cochlear implants and must properly inform the child's parents/guardians and get their written consent before performing the procedure.

Food Labels, Autonomy and the Right (Not) to Know

Food labelling has been overlooked in the emerging body of literature concerning the normative dimensions of food and drink policies. In this paper, I argue that arguments normally advanced in bioethics and medical ethics regarding the “right to know” and the “right not to know” can provide useful normative guidelines for critically assessing existing and proposed food labelling regimes. More specifically, I claim that food labelling ought to respect the legitimate interests and the autonomy of both consumers who seek knowledge about their food in order to make informed dietary choices and consumers who prefer to remain ignorant about the contents and effects of their food in order to avoid the emotional and psychological harm, or more simply the loss of enjoyment, which may result from receiving that information.

Life and Death: The Religious, Philosophical and Moral Dilemmas in Medicine

Religious beliefs often play a major role in the decisions that are made in the home and the hospital concerning issues at the beginning and end of life. Only recently, however, due to rapidly advancing medical technology, have religious, moral, and philosophical beliefs taken such a controversial role. One of the major questions that has arisen from these various controversies is whether or not we have the right to posses control over the biological functions of our bodies. The answer is a difficult one, and it may be one that cannot be answered, but the attempt at an answer is what is at the heart of medical ethics.

Blowing the virtue-ethics whistle: Response to Faunce

The author elaborates some issues raised in the theoretical basis of whistleblowing put forward by Faunce. The author considers the relationship between bioethics teaching and professional behaviour and the role of principlism in teaching bioethics and medical ethics.

Attitudes of Parents at risk of inheriting Li-Fraumeni Syndrome towards predictive genetic testing in their minor-aged children.

Li-Fraumeni Syndrome (LFS) is a hereditary cancer syndrome which predisposes individuals to cancer beginning in childhood. These risks are spread across a lifetime, from early childhood to adulthood. Mutations in the p53 tumor suppressor gene are known to cause the majority of cases of LFS. The risk for early onset cancer in individuals with Li-Fraumeni Syndrome is high. Studies have shown that individuals with LFS have a 90% lifetime cancer risk. Children under 18 have up to a 15% chance of cancer development. Effectiveness of cancer screening and management in individuals with Li-Fraumeni Syndrome is unclear. Screening for LFS-associated cancers has not been shown to reduce mortality. Due to the lack of effective screening techniques for childhood cancers, institutions vary with regard to their policies on testing children for LFS. There are currently no national guidelines regarding predictive testing of children who are at risk of inheriting LFS. No studies have looked at parental attitudes towards predictive p53 genetic testing in their children. This was a cross-sectional pilot study aimed at describing these attitudes. We identified individuals whose children were at risk for inheriting p53 genetic mutations. These individuals were provided with surveys which included validated measures addressing attitudes and beliefs towards genetic testing. The questionnaire included qualitative and quantitative measures. Six individuals completed and returned the questionnaire with a response rate of 28.57%. In general, respondents agreed that parents should have the opportunity to obtain p53 genetic testing for their child. Parents vary in regard to their attitudes towards who should be involved in the decision making process and at what time and under what considerations testing should occur. Testing motivations cited most important by respondents included family history, planning for the future and health management. Concern for insurance genetic discrimination was cited as the most important “con” to genetic testing. Although limited by a poor response rate, this study can give health care practitioners insight into testing attitudes and beliefs of families considering pediatric genetic testing.

Why Most Biomedical Findings Echoed by Newspapers Turn Out to be False: The Case of Attention Deficit Hyperactivity Disorder

Context: Because positive biomedical observations are more often published than those reporting no effect, initial observations are often refuted or attenuated by subsequent studies. Objective: To determine whether newspapers preferentially report on initial findings and whether they also report on subsequent studies. Methods: We focused on attention deficit hyperactivity disorder (ADHD). Using Factiva and PubMed databases, we identified 47 scientific publications on ADHD published in the 1990s and soon echoed by 347 newspapers articles. We selected the ten most echoed publications and collected all their relevant subsequent studies until 2011. We checked whether findings reported in each ‘‘top 10’’ publication were consistent with previous and subsequent observations. We also compared the newspaper coverage of the ‘‘top 10’’ publications to that of their related scientific studies. Results: Seven of the ‘‘top 10’’ publications were initial studies and the conclusions in six of them were either refuted or strongly attenuated subsequently. The seventh was not confirmed or refuted, but its main conclusion appears unlikely. Among the three ‘‘top 10’’ that were not initial studies, two were confirmed subsequently and the third was attenuated. The newspaper coverage of the ‘‘top 10’’ publications (223 articles) was much larger than that of the 67 related studies (57 articles). Moreover, only one of the latter newspaper articles reported that the corresponding ‘‘top 10’’ finding had been attenuated. The average impact factor of the scientific journals publishing studies echoed by newspapers (17.1 n = 56) was higher (p,0.0001) than that corresponding to related publications that were not echoed (6.4 n = 56). Conclusion: Because newspapers preferentially echo initial ADHD findings appearing in prominent journals, they report on uncertain findings that are often refuted or attenuated by subsequent studies. If this media reporting bias generalizes to health sciences, it represents a major cause of distortion in health science communication.

Dilemmas in Military Medical Ethics: A Call for Conceptual Clarity

Article

Bioethics through the telescope: institutional ethics in the NHS

The article argues for a broader conception of bioethics. The principles that dominate current thinking are generally individualistic and do not represent the real world inhabited by patients, doctors, hospitals and the NHS as a whole. Rather than focus almost exclusively on the micro-end of the analytical spectrum, bioethics, and medical lawyers in particular, should take the institutional dimensions of health and health care more seriously, ie use a telescope to understand the dynamics that drive the subject, not just a microscope.

Il ruolo della Narrative in Medical Ethics, Medical Practice e Medical Education. Elementi di ricerca

La mia tesi di dottorato ha ad oggetto lo studio e l’analisi del ruolo della Narrative all’interno di tre ambiti, quali Medical Ethics, Clinical Practice e Medical Education. La tesi è strutturata in 4 capitoli: i primi tre vanno a comporre la parte teorica mentre nel quarto capitolo viene riportata una ricerca sul campo da me svolta negli Stati Uniti. Nel primo capitolo, analizzo il ruolo della narrative all’interno della Medical Ethics specificando che cosa si intenda con etica narrativa, quali sono le motivazione alla base del suo sviluppo e chi sono i suoi principali esponenti. In questo capitolo, inoltre, esamino i problemi che l’etica narrativa solleva suggerendo un nuovo modo in cui essa si integra alla riflessione bioetica. Il secondo capitolo è dedicato al contributo della narrative nella Medical Practice investigando sia le modalità attraverso le quali il paziente può avvalersi della narrazione per analizzare la sua esperienza di malattia sia la cosiddetta Medicina Narrativa. Il terzo capitolo è dedicato all'analisi delle Medical Humanities, ossia di quelle discipline che all’interno della Medical Education si stanno rivelando strumenti efficaci per una formazione più equilibrata e completa dei professionisti della salute. Il quarto capitolo, invece, è dedicato alla descrizione di una ricerca svolta presso l’University of California – Irvine . Durante questa esperienza ho frequentato i corsi del Program in Medical Humanities and Arts diretto dalla Prof.ssa J. Shapiro, (programma in vigore da 13 anni e implementato allo scopo di migliorare alcune competenze nei futuri medici quali: l'empatia, l’altruismo, la compassione e la predisposizione alla cura verso i pazienti, oltre che per affinare le comunicazione clinica e la capacità di osservazione) e intervistato gli studenti che hanno preso parte a queste lezioni.

A Student-Initiated Elective in Medical Ethics: Innovations in Design and Institutionalization

Introduction: This study addresses how to best approach the instruction and evaluation of clinical ethics with preclinical medical students. [See PDF for complete abstract]

PANEL DISCUSSION: "Medical Ethics, Eugenics, and the Holocaust"

A panel discussion moderated by Dr. Thomas R. Cole, McGovern Chair in Medical Humanities and Director of the John P. McGovern Center for Humanities and Ethics at the University of Texas Health Science Center in Houston. Panelists include: Rabbi Samuel E. Karff, Rabbi Emeritus of Congregation Beth Israel and Associate Director of the John P. McGovern Center for Humanities and Ethics and Visiting Professor in the Department of Family Medicine at the University of Texas Health Science Center at the Texas Medical Center. Cardinal DiNardo, the second Archbishop of the Archdiocese of Galveston-Houston and the first cardinal archbishop from a diocese in the Southern United States. Dr. Sheldon Rubenfeld, Clinical Professor of Medicine at Baylor College of Medicine. He is Board Certified in Internal Medicine and in Endocrinology, Diabetes, and Metabolism, and is a Fellow in both the American College of Physicians and the American College of Endocrinology. Dr. Rubenfeld has taught "Healing by Killing: Medicine During the Third Reich" for three years and "Jewish Medical Ethics" for seven years at Baylor College of Medicine. He created a six-month program about Medicine and the Holocaust at Holocaust Museum Houston, including an exhibit entitled How Healing Becomes Killing: Eugenics, Euthanasia, Extermination and a series of lectures by distinguished speakers entitled "The Michael E. DeBakey Medical Ethics Lecture Series".