Analyzing the performance of a blockchain-based personal health record implementation.

BACKGROUND: The Personal Health Record (PHR) and Electronic Health Record (EHR) play a key role in more efficient access to health records by health professionals and patients. It is hard, however, to obtain a unified view of health data that is distributed across different health providers. In particular, health records are commonly scattered in multiple places and are not integrated. OBJECTIVE: This article presents the implementation and evaluation of a PHR model that integrates distributed health records using blockchain technology and the openEHR interoperability standard. We thus follow OmniPHR architecture model, which describes an infrastructure that supports the implementation of a distributed and interoperable PHR. METHODS: Our method involves implementing a prototype and then evaluating the integration and performance of medical records from different production databases. In addition to evaluating the unified view of records, our evaluation criteria also focused on non-functional performance requirements, such as response time, CPU usage, memory occupation, disk, and network usage. RESULTS: We evaluated our model implementation using the data set of more than 40 thousand adult patients anonymized from two hospital databases. We tested the distribution and reintegration of the data to compose a single view of health records. Moreover, we profiled the model by evaluating a scenario with 10 superpeers and thousands of competing sessions transacting operations on health records simultaneously, resulting in an average response time below 500 ms. The blockchain implemented in our prototype achieved 98% availability. CONCLUSION: Our performance results indicated that data distributed via a blockchain could be recovered with low average response time and high availability in the scenarios we tested. Our study also demonstrated how OmniPHR model implementation can integrate distributed data into a unified view of health records.

Cross-cultural validation of the Brazilian version of the spiritual care competence scale.

OBJECTIVE: This study describes the cross-cultural validation and psychometric evaluation of the Spiritual Care Competence Scale - Brazilian Portuguese version. This reliable and valid instrument is recommended in the literature to measure the outcomes of the education process in the development of spiritual care competences. METHOD: This is a cross-sectional validation study following the stages proposed by Beaton et al.: translation into Portuguese, back translation into English, expert committee review for semantic equivalence, assessment of the clarity of the pre-final version, and evaluation of the psychometric properties of the final version in Portuguese. Health professionals working at a public hospital in South Brazil participated in the different stages of this study.ResultRegarding internal consistency, total Cronbach's alpha was 0.92 and the mean inter-item correlation was 0.29. The test-retest procedure showed no statistically significant differences in the six subscales. The intraclass correlation coefficient ranged from 0.67 to 0.84, demonstrating the stability of the scale.Significance of resultsThe results support the psychometric quality of the scale and indicate that the adapted instrument is a valid and reliable scale with good internal consistency for measuring spiritual care competencies of health professionals in Brazilian healthcare settings.

Spirituality in the continuing education of healthcare professionals: An approach to palliative care.

OBJECTIVE: A major barrier to the adoption of an approach that integrates spirituality into palliative care is the lack of preparation/education of healthcare professionals on the topic. This study aimed to evaluate the effectiveness of a continuing education activity for healthcare professionals addressing spirituality and spiritual care provision to patients and families within palliative care. METHOD: We conducted an intervention study using a quantitative pre- and posttest design in a convenience sample of 52 healthcare professionals. Participants completed the Brazilian version of the Spiritual Care Competence Scale before and after attending a four-hour continuing education activity. RESULT: Significant differences were observed between pre- and postintervention scores in the following dimensions: assessment and implementation of spiritual care, professionalization and improving the quality of spiritual care, personal support, and patient counseling (p < 0.001), and referral (p = 0.003). SIGNIFICANCE OF RESULTS: The results of this study provide preliminary evidence of a positive effect of this educational intervention on the development of the competences needed by healthcare professionals to deliver a comprehensive approach centered on the patient/family, which includes attention to spirituality and spiritual care in the decision-making process.

[Perceived coercion of noninstitutionalized elderly patients undergoing research for the diagnosis of temporomandibular joint dysfunction]. / Avaliação da percepção de coerção em idosos não institucionalizados submetidos a pesquisa para diagnóstico da disfunção temporomandibular.

OBJECTIVE: To evaluate perceived coercion (PC) of noninstitutionalized elderly patients undergoing research for the diagnosis of temporomandibular joint dysfunction. METHOD: A cross-sectional study conducted with 1,112 elderly individuals aged 60 or older, enrolled in the Family Health Programme of the municipality of Areia, State of Paraíba, Brazil, from January to June 2013. The data collection tool was the Perceived Coercion Scale (PSC). RESULTS: The participants were predominantly women (62.5%) in the 60 to 69 age group (45.9%), illiterate (57.9% percent), married or in a common law marriage (54.1%), retired (83.6%), and receiving a monthly income under the minimum wage (72.0%). The average overall PC was 1.25+ 1.15 and Trend 1 (41,4%). There was a difference between the group of individuals who were literate, married and in a common law marriage and the members of the other groups. CONCLUSION: Results showed that the elderly patients were minimally coerced when deciding whether to participate in research for diagnosing temporomandibular joint dysfunction. They also revealed a significant association of PC with literacy and marital status.

The history of families at-risk for hereditary breast and ovarian cancer: what are the impacts of genetic counseling and testing?

Introduction: Cancer Genetic Counseling (CGC) and genetic testing (GT) assume a paramount role for hereditary cancer predisposition syndrome families. We assessed the effects of CGC and GT on women affected by cancer who are at risk for hereditary breast and ovarian cancer predisposition syndrome (HBOC). Methods: This study encompasses four time points: before the CGC session, after the CGC session when blood is drawn for GT, after disclosure of GT results, and six months following disclosure of GT results. The impacts of CGC and GT were assessed using psychosocial questionnaires. Additionally, a pedigree, genogram, and ecomap were constructed through a semistructured interview. Results: A total of sixty women were included in the study. Most participants considered their perception of cancer risk to be equivalent to that of the general population, even among those with pathogenic variants. An increased perception of breast and ovarian cancer risks was associated with a heightened inclination toward religious engagement as a coping mechanism. Patients carrying variants of uncertain significance expressed greater concerns about developing another cancer compared to those who had BRCA1 and BRCA2 wild type or pathogenic variants. Qualitative analysis of the genograms and ecomaps demonstrated that the CGC/GT processes facilitate communication within families. The genogram analyses revealed the impact of CGC and GT processes on families at risk for hereditary cancer. Changes in some family relationships were observed, and an improvement in communication was noted following the GT process. Discussion: These findings can assist healthcare professionals considering a personalized approaches in clinical practice.

Automatic documentation of professional health interactions: A systematic review.

Electronic systems are increasingly present in the healthcare system and are often related to improved medical care. However, the widespread use of these technologies ended up building a relationship of dependence that can disrupt the doctor-patient relationship. In this context, digital scribes are automated clinical documentation systems that capture the physician-patient conversation and then generate the documentation for the appointment, enabling the physician to engage with the patient entirely. We have performed a systematic literature review on intelligent solutions for automatic speech recognition (ASR) with automatic documentation during a medical interview. The scope included only original research on systems that could detect speech and transcribe it in a natural and structured fashion simultaneously with the doctor-patient interaction, excluding speech-to-text-only technologies. The search resulted in a total of 1995 titles, with eight articles remaining after filtering for the inclusion and exclusion criteria. The intelligent models mainly consisted of an ASR system with natural language processing capability, a medical lexicon, and structured text output. None of the articles had a commercially available product at the time of the publication and reported limited real-life experience. So far, none of the applications has been prospectively validated and tested in large-scale clinical studies. Nonetheless, these first reports suggest that automatic speech recognition may be a valuable tool in the future to facilitate medical registration in a faster and more reliable manner. Improving transparency, accuracy, and empathy could drastically change how patients and doctors experience a medical visit. Unfortunately, clinical data on the usability and benefits of such applications is almost non-existent. We believe that future work in this area is necessary and needed.

Cancer Risk Factors in Southern Brazil: Report of a Comprehensive, Matched Case-Control Study.

PURPOSE: To evaluate cancer risk factors among cancer cases and controls from Southern Brazil, to analyze a multigene hereditary panel testing (MGPT, 26 genes) for breast cancer (BC) and colorectal cancer (CCR) cases diagnosed age younger than 50 years and to characterize them for hereditary cancer syndrome (HCS) phenotypes. METHODS: A case-control (matched by age group and sex) study was conducted on regional cancer. Data on exposure factors and first-/second-degree family history of cancer (1/2FHC) were collected. The MGPT was performed using Illumina next-generation sequencing technology. RESULTS: A total of 1,007 cases and 1,007 controls were included. The most frequent cancers were BC (n = 311), CCR (n = 147), prostate (n = 132), and lung cancers (n = 89). It was independently associated with cancer, 1/2FHC, tobacco consumption (TC), pesticide exposure (PE), solvent/glue exposure, and BMI <24. BC was associated with 1/2FHC, TC, and hormone replacement therapy use; CCR with 1/2FHC, TC, and BMI <24; prostate cancer with 1/2FHC, TC, and alcohol consumption; and lung cancer with 1/2FHC, TC, PE, and BMI <24. MGPT identified pathogenic/likely pathogenic mutations in 24 (32%) women with BC and in three (18%) women and four (24%) men diagnosed with CCR at under 50 years. Among the tested patients under 50 years with diagnosed BC and CCR, 98.6% and 97% present criteria for HCS, respectively. CONCLUSION: This study confirmed the association of several factors associated with BC, CCR, prostate, and lung cancers and reinforced the importance of evaluating FHC and genetic testing, especially for patients under 50 years with diagnosed BC or CCR. A better understanding of population-specific cancer risk factors builds on sustainable data for developing prevention strategies. These efforts increase the commitment to early detection and surveillance.

A qualitative study exploring the process of postmortem brain tissue donation after suicide.

Access to postmortem brain tissue can be valuable in refining knowledge on the pathophysiology and genetics of neuropsychiatric disorders. Obtaining postmortem consent for the donation after death by suicide can be difficult, as families may be overwhelmed by a violent and unexpected death. Examining the process of brain donation can inform on how the request can best be conducted. This is a qualitative study with in-depth interviews with forty-one people that were asked to consider brain donation-32 who had consented to donation and 9 who refused it. Data collection and analyses were carried out according to grounded theory. Five key themes emerged from data analysis: the context of the families, the invitation to talk to the research team, the experience with the request protocol, the participants' assessment of the experience, and their participation in the study as an opportunity to heal. The participants indicated that a brain donation request that is respectful and tactful can be made without adding to the family distress brought on by suicide and pondering brain donation was seen as an opportunity to transform the meaning of the death and invest it with a modicum of solace for being able to contribute to research.

[Confusions and ambiguities in the classification of adverse events in the clinical research]. / Confusões e ambigüidades na classificação de eventos adversos em pesquisa clínica.

It is quite common to consider the terms ambiguous and confusing as synonyms. Confusing information brings together various data with similar meanings. In ambiguous information, on the other hand, several meanings are assigned to a single word. Excessive information also generates ambiguity; therefore, a concise, clear language is demanded. The term adverse event (AE) is defined as any inconvenient medical occurrence suffered by a subject during a clinical investigation research. Confusion and ambiguity in the use of words may generate relevant consequences in the appraisal of AEs. The objective of this present theoretical study is to harmonize the vocabulary applied in the characterization of risks and in the communication of AEs in clinical research processes. AEs may be classified according to their predictability, frequency, gravity, causality, and severity. Regulatory documents usually address AEs in their severity and causality aspects. Vocabulary conformity in the communication of AEs is an essential step towards avoiding inaccurate use of words with confused or ambiguous meanings.

Barriers to the composition and implementation of advance directives in oncology: a literature review.

The advance directive (AD) is an important resource in oncology and all areas of medicine directly involved in the care of palliative patients. It provides people with the right to have their living wills honoured when they cannot respond by themselves. Despite their importance, ADs are still underused in most countries due to multiple factors. The objective of this review is to better categorise the barriers and difficulties that could impair the composition and implementation of ADs, allowing direct efforts against these obstacles. After the literature review, we believe that there would be five steps in the trajectory of an AD (discussion, composition, registration, access and implementation) and that all those steps can be affected by factors involving the health systems and professionals, the patient themselves and relatives or caregivers.

Sexual function in women from infertile couples and in women seeking surgical sterilization.

The purpose of this study was to compare sexual function between women of infertile couples (AR) and women seeking tubal ligation (TL). Women who attended Setor de Infertilidade do Serviço de Ginecologia e Obstetrícia do Hospital de Clinicas de Porto Alegre (HCPA) or the Serviço de Orientação e Planejamento Familiar (SERPLAN) completed the Female Sexual Function Index, a questionnaire about sexual activity in the last 4 weeks. Scored data were collected on six different domains: desire, arousal, lubrication, orgasm, satisfaction, and discomfort/pain. The greatest positive correlation in the TL group was between orgasm and sexual satisfaction (0.798), and in group AR between desire and arousal (0.627). Infertile women and fertile women who want to undergo surgical sterilization have similar sexual satisfaction scores.

[The contribution of social restrictions to smoking cessation]. / A contribuição de restrições sociais ao fumo para o abandono do tabagismo.

This is a qualitative study that analyzed how social restrictions contribute to the cessation of smoking. Sixteen individuals from Porto Alegre, Rio Grande do Sul, Brazil in abstinence for more than six months with a dependence of > or = 5 in the Fagerström scale were interviewed. Content analysis showed that social restrictions to smoking contributed to smoking cessation and were translated into regulations, as well as in the awareness of the interference of smoking in social interactions. Although these restrictions could be uncomfortable for smokers, they had the effect of helping to mobilize and educate them in the smoking cessation process. Faced to the hard task of quitting smoking, we realize the responsibility of health professionals to support and reinforce smokers and nonsmokers on the importance of giving up the habit.

Bioética Complexa e a saúde da mulher / Complex Bioethics and women's health / Bioética Compleja y la salud de la mujer

Objetivo: discutir diferentes abordagens éticas, na perspectiva do Modelo Bioética Complexa (MBC), sobre as questões da saúde da mulher. O MBC é uma reflexão que tem por finalidade verificar a adequação das ações envolvidas com os aspectos biológicos e biográficos, em uma perspectiva interdisciplinar, amparada por referenciais teóricos diversos e considerando também situações individuais e sociais. Metodologia: revisão narrativa de literatura, considerando múltiplas perspectivas bioéticas e éticas em relação aos temas de saúde da mulher. Resultados: os resultados de pesquisa envolvem a referência de 37 textos e considerações dos autores, fruto de pesquisas envolvendo o MBC há mais de 17 anos, em ambiente de saúde. Conclusão: a reflexão da adequação de avaliações e decisões na área da saúde da mulher deve envolver uma multiplicidade de aspectos e perspectivas, neste sentido é necessário que está visão complexa permeie o desenho de políticas de assistência à saúde.

Objective: to discuss various ethical approaches from the perspective of the Complex Bioethics Model (CBM) to women's health issues. The CBM aims to review the appropriateness of actions involving biological and biographical aspects in an interdisciplinary perspective, supported by different theoretical references and considering individual and social situations. Methods: narrative literature review considering different bioethical and ethical perspectives related to women's health. Results: research findings include references to 37 texts and reflections by the author, who has conducted health research with CBM for more than 17 years. Conclusion: reflection on the appropriateness of assessments and decisions in the field of women's health should encompass a variety of aspects and perspectives. In this sense, it is necessary that this complex perspective be included in health policy decision making.

Objetivo: este artículo pretende debatir diferentes enfoques éticos, desde la perspectiva del Modelo de Bioética Compleja (MBC), sobre cuestiones de salud de la mujer. El MBC es una reflexión que pretende verificar la adecuación de las acciones involucradas con aspectos biológicos y biográficos, en una perspectiva interdisciplinaria, recortada por diversas referencias teóricas y considerando también situaciones individuales y sociales. Metodología: revisión narrativa de la literatura, considerando múltiples perspectivas bioéticas y éticas en relación con temas de salud de la mujer. Resultados: los resultados de la investigación involucran la referencia de 37 textos y consideraciones de los autores fruto de investigaciones que involucran el MBC por más de 17años en el ambiente de salud. Conclusión: la reflexión sobre la adecuación de las evaluaciones y decisiones en el ámbito de la salud de las mujeres debe implicar una multiplicidad de aspectos y perspectivas, en este sentido es necesario que esta visión compleja impregne el diseño de las políticas de atención sanitaria.

Compreensão e comunicação de cuidados paliativos em neonatologia: abordagem bioética / Understanding and communication of neonatal palliative care: a bioethical approach / Comprensión y comunicación de los cuidados paliativos en neonatología: un enfoque bioético

Resumo Tratar de morte e cuidados paliativos em neonatologia é desafiador para os profissionais de saúde. Esse estudo buscou conhecer a compreensão e o processo de comunicação em cuidado paliativo em neonatologia em um hospital do Sul do Brasil, e analisar os resultados sob a perspectiva da bioética, por meio de pesquisa qualitativa e descritiva de caráter retrospectivo. Foram realizadas entrevistas semiestruturadas com 14 participantes (sete mães e sete médicos) entre junho de 2021 e agosto de 2022. Para análise dos dados, foi utilizada a análise de conteúdo de Bardin e, dentre as categorias emergentes, destacam-se duas: conhecimento sobre cuidado paliativo e comunicação em cuidados paliativos. Concluiu-se que há entraves na comunicação que podem interferir na compreensão da família sobre o conceito de cuidado paliativo. É necessário maior investimento em educação sobre temas como bioética, paliatividade e comunicação de más notícias para facilitar esses processos e instrumentalizar os profissionais.

Abstract Dealing with death and palliative care in neonatology is challenging for health professionals. This retrospective qualitative and descriptive study sought to understand the process of neonatal palliative care communication in a hospital in southern Brazil, analyzing the results from a bioethical perspective. Data were collected by semi-structured interviews, conducted with 14 participants (seven mothers and seven doctors) between June 2021 and August 2022, and examined using Bardin's content analysis. Two categories stood out: knowledge about palliative care and communication in palliative care. In conclusion, existing communication obstacles can interfere with the family's understanding of palliative care. Education on topics such as bioethics, palliative care and communication of bad news require greater investments to facilitate these processes and equip professionals.

Resumen Lidiar con la muerte y los cuidados paliativos en neonatología es un desafío para los profesionales de la salud. Este estudio buscó conocer la comprensión y el proceso de comunicación en los cuidados paliativos en neonatología en un hospital del Sur de Brasil, y analizar los resultados desde la perspectiva de la bioética utilizando investigación cualitativa y descriptiva retrospectiva. Se realizaron entrevistas semiestructuradas a 14 participantes (siete madres y siete médicos) entre junio de 2021 y agosto de 2022. Se utilizó el análisis de contenido de Bardin para analizar los datos y, entre las categorías emergentes, destacan conocimiento sobre cuidados paliativos y comunicación en cuidados paliativos. Existen obstáculos en la comunicación que pueden interferir en la comprensión de la familia sobre cuidados paliativos. Hay que invertir más en temas como bioética, cuidados paliativos y comunicación de malas noticias para facilitar estos procesos y proporcionar a los profesionales las herramientas necesarias.

O entendimento da dependência química por pacientes em tratamento em uma unidade de internação especializada / The understanding of addiction from patients being treated in a specialized hospitalization unit

A dependência química é um fenômeno social complexo, pois envolve diferentes instituições e atores sociais no seu enfrentamento. O conhecimento da perspectiva das pessoas que sofrem desse transtorno e buscam tratamento é de fundamental importância para a produção de evidências científicas visando à elaboração de políticas públicas. Analisar as percepções sobre a dependência química de pacientes em tratamento do transtorno por uso de substâncias psicoativas. Trata-se de estudo qualitativo, descritivo e exploratório em que foram realizadas entrevistas semiestruturadas com pacientes internados em uma unidade de internação especializada no tratamento da dependência química em um hospital universitário de alta complexidade no Sul do Brasil. Mediante a análise de conteúdo de Bardin, construíram-se quatro categorias analíticas para a compreensão das percepções sobre este problema na perspectiva dos pacientes: (1) Buscando tratamento, (2) Causas da dependência química, (3) Perdas e ganhos associados ao uso de substâncias psicoativas e (4) Ter uma vida saudável. Observaram-se quais motivos e causas apresentaram uma relação de complementaridade, na medida em que as causas do início do uso também foram os motivos para buscar tratamento. Além disso, identificou-se que os participantes reconheceram utilidade no uso de substâncias psicoativas, com predomínio das perdas sobre os ganhos, demonstrando que este é um ponto importante de ser abordado em ações de educação em saúde com essa população.

Many institutions and social actors are involved in the struggle against addiction, making it a complex social phenomenon. Knowledge about the perspective of those who suffer this type of disorder and seek treatment is essential to produce scientific evidence to elaborate public policies. To analyze perceptions about chemical dependency of patients being treated for disorder associated with psychoactive substances. This is a qualitative, descriptive, and exploratory study. We carried out semi-structured interviews with patients hospitalized in a unit specialized in treating addiction from a high-complexity teaching hospital in the south of Brazil. Using Bardin's content analysis, we created four analytical categories to understand the perceptions about this problem, from the perspective of patients: (1) Seeking treatment; (2) Causes of addiction; (3) Pros and cons of using psychoactive substances; and (4) Leading a healthy life. We observed which motives and causes were complementary, as the causes for starting the use of these substances were the same causes for seeking treatment. Furthermore, participants believed psychoactive substances had some utility, though there were more disadvantages than advantages. This is an important element to address in actions of education in health when dealing with this population.

[Privacy and confidentiality in adolescent health care: perceptions and behavior of a group of 711 college students]. / Privacidade e confidencialidade na assistência à saúde do adolescente: percepções e comportamentos de um grupo de 711 universitários.

OBJECTIVE: To understand the opinion and behavior of a group of college students about the degree of privacy considered appropriate in several clinical settings and in which situations breach of confidentiality is admitted. METHODS: An anonymous questionnaire about confidentiality in clinical settings was answered by 711 college students. The study had a transversal, descriptive, qualitative-quantitative design. We studied recognition of the ethical criteria for confidentiality limitation, and in which situations, common in adolescent morbidity, disclosure of this information is accepted. Data analysis used Epi-Info 6.04 and Microsoft Excel, 1997. The research was approved by PUCRS' IRB. RESULTS: The ideal situation for disclosing information was considered by 82% of the adolescents as the previous granting of authorization, which differs from other forms of breaching confidentiality. In cases of non-authorized disclosure, most of them admitted that it in case of suicidal ideation (85%), violence (84.2%), sexual abuse (81.7%), nervous anorexia (81.3%) and risk of life to third parties (72.3%). Half of them agree to it in HIV/AIDS (57.9%), drug abuse (51.7%) and STD (44.7%) situations; less than one third accept it in situations of pregnancy (33.6%), homosexuality (20.7%) and sexual activity (15.6%). CONCLUSION: Participants assigned different grades to the value of confidentiality in their health care, accepting that information may be disclosed to others when the patient authorizes it. The higher the risk to their integrity, the easier it was for them to admit non-authorized disclosure of information, however in aspects related to their sexuality disclosure is practically denied.

Diretivas antecipadas de vontade em unidade de emergência hospitalar / Advance directives in a hospital emergency department / Directivas anticipadas de voluntad en una unidad de emergencia hospitalaria

Resumo A participação do paciente no planejamento de seus cuidados de saúde respeita seu direito à autodeterminação. Com isso, esta pesquisa teve como objetivo avaliar o posicionamento de médicos que atuam no Serviço de Emergência Hospitalar do Hospital de Clínicas de Porto Alegre em relação às diretivas antecipadas de vontade de pacientes. Trata-se de estudo transversal com 32 médicos. A maioria dos participantes (81,3%) afirmou conhecer as diretivas antecipadas de vontade, mas apenas 6,3% tinham conhecimento suficiente; 87,5% foram favoráveis à sua utilização e a vontade do paciente foi considerada determinante em três dos quatro cenários apresentados; e 84,4% consideraram necessária legislação específica além da Resolução 1.995/2012 do Conselho Federal de Medicina. Ao final do estudo foi concluído que a maioria dos médicos tinha conhecimento prévio sobre diretivas antecipadas de vontade e se posicionara a favor da utilização deste tipo de documento em emergência hospitalar.

Abstract Patient participation in planning their health care means respecting the patient's right to self-determination. In this sense, this study aimed to examine the position of doctors working in the Hospital Emergency Service of the Hospital de Clínicas de Porto Alegre regarding patient advance directives. This is a cross-sectional study conducted with 32 physicians. Most participants (81.3%) declared to have knowledge about advance directives, but only 6.3% declared having sufficient knowledge; 87.5% were in favor of their use and the patient's will was considered decisive in three of the four scenarios presented; and 84.4% considered that specific legislation on the matter is necessary in addition to Resolution 1995/2012 of the Federal Council of Medicine. Our results allowed us to conclude that most physicians had prior knowledge about advance directives and were in favor of using this type of document in hospital emergency care.

Resumen La participación del paciente en la planificación de su atención médica respeta su derecho a la autodeterminación. Así, esta investigación tuvo como objetivo evaluar el posicionamiento de médicos que actúan en el servicio de emergencia hospitalaria del Hospital de Clínicas de Porto Alegre en relación a las directivas anticipadas de voluntad de los pacientes. Se trata de un estudio transversal con 32 médicos. La mayoría de los participantes (81,3%) afirmó conocer las directivas anticipadas de voluntad, pero solo el 6,3% tenía conocimiento suficiente; el 87,5% se mostró a favor de su uso y la voluntad del paciente fue considerada determinante en tres de los cuatro escenarios presentados; y el 84,4% consideró necesaria una legislación específica además de la Resolución 1995/2012 del Consejo Federal de Medicina. Al final del estudio se concluyó que la mayoría de los médicos tenían conocimiento previo sobre directivas anticipadas de voluntad y se habían posicionado a favor de la utilización de este tipo de documentos en emergencias hospitalarias.

Brazilian legal and bioethical approach about donation for research and patents of human body parts.

The aim of this paper is to explain why the Brazilian legal system does not accept commercialization or commodification of human body parts, including genes or cells. As a consequence, in Brazil, the donation of human body parts for research-including basic or translational-must be made altruistically. For the same reason, the Brazilian patent system cannot be applied to human parts, cells or genes. Here, we present a qualitative analysis of juridical, bioethical, and social reasoning related to the legal status of human body parts especially in biobanks, as well as a description of the Brazilian legal system for clarification. Our aim is to discuss the responsibility of researchers for making available the scientific information resulting from scientific research and biobank storage of human body parts and to ensure the free utilization of knowledge in human health research.

Morte e morrer em tempos de COVID-19 / Death and dying in times of COVID-19

A pandemia da COVID-19 está tendo impactos em toda a sociedade humana. Muitas questões antes abordadas no plano individual pela Bioética agora tem o desafio de ter o seu enfoque ampliado para toda a sociedade. É uma grande provocação que as diversas áreas estão buscando responder adequadamente em meio a cenários desconhecidos ou incertos. A reflexão sobre os temas envolvidos nas questões da morte e do morrer são fundamentais e devem ser realizadas. (AU)

The COVID-19 pandemic is having an impact on human society as a whole. Many issues previously addressed at the individual level by bioethics now face the challenge of having their focus expanded to the society level. It is a great challenge that different areas are trying to adequately respond to in the midst of unknown or uncertain scenarios. Reflecting on the topics involved in the issues of death and dying is crucial and must be carried out. (AU)