Practices and attitudes of herbalists regarding informed consent in Uganda: a qualitative study.

BACKGROUND: Informed consent (IC) is a fundamental principle in medical ethics that upholds respect for patient autonomy. Although widely applied in healthcare, its feasibility and implementation in herbal medicine have been underexplored. This study therefore aimed to explore the practices and attitudes of herbalists regarding informed consent. METHODS: To achieve these objectives, a qualitative cross-sectional study was conducted from June to December 2020. Twenty-one in-depth interviews with herbalists and four key informant interviews with leaders of the different traditional medicine organizations were conducted. The data were analyzed thematically using NVivo version 12 software. RESULTS: Sixteen of the twenty-one participants acquired oral herbal medicine knowledge from their relatives. Although a positive inclination toward obtaining IC was evident, the focus was on disclosing basic information. Discussions of alternative treatments and herbal specifics were less frequent. Disease management decisions often involve shared responsibility within families or societies. Documented IC procedures are rare among herbalists, who deem consent forms unnecessary, although they recognize the potential benefits of IC in fostering trust and professionalism. Challenges hindering IC implementation included regulatory gaps, inadequate skills, and the absence of mechanisms to protect the intellectual property rights of herbal medicine. CONCLUSION: This study illuminates how educational, cultural, familial, and regulatory factors influence herbalists' practices and attitudes toward informed consent.

Biobank consent under the GDPR: are potential sample donors informed about all lawful uses of biobank data?

This paper analyses the information disclosures in two biobank consent documents used by biobanks operating under the General Data Protection Regulation (GDPR). The aim of the analysis is to investigate how these documents inform potential sample donors about possible future uses of biobank data. The findings suggest that the consent documents provide potentially misleading information regarding the range of possible future uses of biobank data. Based on these information disclosures, potential sample donors may reasonably believe that the data can only be used for a narrowly defined range of research purposes. However, the range of lawful uses of the data is much broader and less clearly defined. Consent provided based on misleading information is not morally transformative, even if it were legally valid. To facilitate morally transformative biobank consent, this paper provides two recommendations for information disclosure to potential sample donors regarding future uses of biobank data: first, potential sample donors should be informed about the legal scope of consent; and second, they should be informed about the full range of lawful uses of biobank data.

Consent in Limb Lengthening Surgery: Predicting the True Incidence of Material Risk.

Aim: The consent process involves supported decision-making between the surgeon and the patient. Both potential benefits and material risks of the procedure require explanation, with adequate time for reflection. The complexity of limb reconstruction surgery includes the potential for multiple types of complications. In an attempt to delineate the material risks in lower limb lengthening, a literature review was undertaken to ascertain the published rates of complications. Materials and methods: A review of articles from 2003 to 2023 via PubMed and Google Scholar, including keywords 'lengthening', 'tibia', 'lengthening nail' and 'external fixator' was undertaken. Studies with a minimum of 20 patients, undergoing lengthening of the femur, tibia, or both by an external fixator and/or an intramedullary lengthening nail were included for analysis. Complications were reported according to Paley's problems, obstacles, and complications. Results: Twenty-two papers met the inclusion criteria. The commonest complications listed following lengthening using an external fixator were pin site infections (52% in the femur and 18.8% in the tibia), delayed consolidation (8.3%), bone re-fracture (13%), and joint stiffness (18.8%). Following femoral lengthening using the intramedullary lengthening nails reported complication rates were lower, including implant issues (8%) and delayed consolidation (6%). Conclusion: Patients require a full understanding of both benefits and potential harms when undergoing any surgical intervention. Our study has identified the published rates of complications following lower limb lengthening. These figures can be used to guide the consultation and enable surgeons to audit their own surgical results against the published literature. How to cite this article: Makvana S, Robertson A, Britten S, et al. Consent in Limb Lengthening Surgery: Predicting the True Incidence of Material Risk. Strategies Trauma Limb Reconstr 2024;19(2):61-66.

Role of procedure-specific consent forms in clinical practice: a systematic review.

INTRODUCTION: Consent forms play an active role in the consent process with generic, handwritten consent forms (GCF) often the standard across the National Health Service. Increasingly, procedure-specific consent forms (PSCF) are being used as an alternative. However, concerns remain about whether they meet the standard for consent. We therefore conducted a systematic review with the objectives of investigating evidence for PSCF, study methodology and medicolegal criteria. METHODS: This systematic review was prospectively registered on PROSPERO (CRD42023392693) and conducted from 1 January 1990 to 17 March 2023 using the MEDLINE, Embase, CINAHL, CENTRAL and Emcare databases. A grey literature search was also performed. All studies evaluating PSCF in medical and surgical settings were included. Risk-of-bias analysis was performed using 'RoB 2' and 'ROBINS-I'. Meta-analysis was not possible because of the results' heterogeneity. FINDINGS: We identified 21 studies investigating PSCF with no systematic reviews and meta-analyses reported. Most studies were quality improvement projects (n = 10) followed by randomised studies (n = 5). No definitive legal guidance for PSCFs and no studies assessing their role in litigation post-procedural complications were identified. PSCFs were associated with improved documentation (70%-100%; n = 11) and legibility (100%; n = 2) compared with GCF. Randomised studies (n = 4) investigating patient understanding and recall for PSCF were inconclusive compared with GCF. CONCLUSIONS: The heterogeneous evidence available merely demonstrates superior documentation of PSCF compared with GCF. Studies do not adequately investigate the impact on informed consent and fail to address the associated legal concerns. Further randomised studies with patient-centric outcomes and consideration for medicolegal criteria are needed.

Enhancing patient-provider encounters when proposing SDF therapy by utilizing a qualitative analysis of parental feedback.

Purpose: Silver Diamine Fluoride (SDF) is a minimally invasive option for caries arrest, part of a paradigm shift in the management of pediatric dental caries. The perspective of parents regarding the long-term pros and cons of this therapy should be understood in order to achieve optimal patient-centered care. Methods: This study used Constant comparative analysis as an analytic approach, applying the Precaution-Adoption Process Model (PAPM) as the Grounded Theory framework in the qualitative analysis of 30 parental unformatted, spontaneous comments collected at the end of a questionnaire to evaluate their satisfaction with treatment provided at a University Clinic. Results: Our analysis provided important insights about the factors that influenced the parents' decision to act and have their child receive SDF therapy, their perception of the outcomes, the necessary follow-ups after the therapy, and what impacted on their overall satisfaction with the completed procedure. Both positive and negative themes were identified. The positive themes point to SDF treatment's ease of application and addressing the immediate treatment needs on children with limited cooperation. The negative themes identified the adverse consequences of SDF treatment, specifically, the duration and appearance of the cosmetic consequences, as well as the parents' misunderstandings and incorrect expectations of the long-term sustainability of the treatment, which in many instances requires further interventions. It was also evident from the parents' comments that they needed additional educational guidance on other aspects of the treatment, such as the necessity for clinical follow-ups, information that impacted parents' overall satisfaction with the treatment their child received. Conclusion: Our results highlight the need to discuss the short and long term benefits of the treatment, as well as, its short and long-term limitations. Specifically, while it is important to discuss immediate outcomes and consequences, such as the ease of treatment and the resultant staining, to ensure that parental consent for the treatment is truly well-informed, it is also important to prepare parents, when this procedure is initially proposed, of the likely need for additional oral care interventions in the future.

Universal screening of colorectal tumors for lynch syndrome: a survey of patient experiences and opinions.

BACKGROUND: Lynch syndrome represents the most common hereditary cause of both colorectal and endometrial cancer. It is caused by defects in mismatch repair genes, as well as EPCAM. Universal screening of colon tumors for Lynch syndrome via microsatellite instability (MSI) and/or immunohistochemistry (IHC) can identify patients and families at risk to develop further cancers and potentially impact surveillance and treatment options. The approach to implementation of universal screening, taking ethical considerations into account, is critical to its effectiveness, with patient perspectives providing valuable insight. METHODS: Patients whose colon tumors underwent universal screening at Penn State Hershey Medical Center over a period of 2.5 years were mailed a survey on universal screening in 2017. Along with the survey, they received a recruitment letter and a summary explanation of research. The survey included both multiple choice and free-response questions that covered topics including respondent knowledge of Lynch syndrome, attitudes toward universal screening and experiences with the screening protocol as implemented. RESULTS: Sixty-six of 297 possible patients (22.2%) responded to the survey, including 13 whose screening results raised concern for Lynch syndrome. 75.8% of respondents supported universal tumor screening without informed consent. 92.4% preferred receiving screening results regardless of outcome. Respondents described benefits to screening for themselves and their families. CONCLUSIONS: While broadly supporting universal tumor screening without informed consent, respondents also wanted more information shared about the screening policy, as well as their results. These patient preferences should be one of many factors considered when implementing universal screening and can also inform practices regarding both tumor profiling and universal genetic testing, which is becoming more prevalent.

Evolution of informed consent in research: From the Hippocratic Oath to the tailored consent.

Background: Informed consent (IC) is essential in defending the autonomy of potential participants in clinical research. Despite the advances in research ethics, particularly in IC, the different guidelines and codes have not been fully implemented. Several studies have presented consent deficiencies that have resulted in unethical practices or poor understanding of the IC. Main body: This article reviews the evolution of IC, from its philosophical origins and initial use in the Ottoman Empire (16th century) to its use in clinical research today. It also presents the vision of the European project i-CONSENT (Grant Agreement number: 741856), whose main purpose is to improve the understanding of ICs in research and identifies the key components of a new paradigm to develop patient-centred ICs. Conclusions: In many cases, the IC has served to protect the investigator or sponsor from complaints. Different ethical guidelines have sought to make the IC a more useful tool, with little success. Today's IC is mainly a bureaucratic and legal process that fails to consider the patient's point of view. In this context, the Guidelines for Tailoring the Informed Consent Process in Clinical Studies provide alternatives to the current IC process, focusing on the patient's opinions and making them part of the process, thereby improving clinical research quality.

Navigating ethical challenges in online wildlife trade research.

The surge in internet accessibility has transformed wildlife trade by facilitating the acquisition of wildlife through online platforms. This scenario presents unique ethical challenges for researchers, as traditional ethical frameworks for in-person research cannot be readily applied to the online realm. Currently, there is a lack of clearly defined guidelines for appropriate ethical procedures when conducting online wildlife trade (OWT) research. In response to this, we consulted the scientific literature on ethical considerations in online research and examined existing guidelines established by professional societies and ethical boards. Based on these documents, we present a set of recommendations that can inform the development of ethically responsible OWT research. Key ethical challenges in designing and executing OWT research include the violation of privacy rights, defining subjects and illegality, and the risk of misinterpretation or posing risks to participants when sharing data. Potential solutions include considering participants' expectations of privacy, defining when participants are authors versus subjects, understanding the legal and cultural context, minimizing data collection, ensuring anonymization, and removing metadata. Best practices also involve being culturally sensitive when analyzing and reporting findings. Adhering to these guidelines can help mitigate potential pitfalls and provides valuable insights to editors, researchers, and ethical review boards, enabling them to conduct scientifically rigorous and ethically responsible OWT research to advance this growing field.

Los retos éticos de la investigación del mercado virtual de fauna Resumen El incremento en el acceso al internet ha transformado el mercado de fauna ya que facilita la adquisición de ejemplares a través de plataformas virtuales. Este escenario representa un reto ético único para los investigadores, pues los marcos éticos tradicionales para la investigación en persona no pueden aplicarse fácilmente en línea. Actualmente no hay lineamientos claros para el procedimiento ético apropiado cuando se investiga el mercado virtual de fauna (MVF). Como respuesta, consultamos la literatura científica sobre las consideraciones éticas en la investigación en línea y analizamos los lineamientos existentes establecidos por las sociedades profesionales y los comités éticos. Con base en estos documentos, presentamos un conjunto de recomendaciones que pueden guiar el desarrollo de la investigación sobre el MVF con responsabilidad ética. Los retos más importantes para el diseño y ejecución de la investigación sobre el MVF incluyen la violación del derecho a la privacidad, la definición de los sujetos y la ilegalidad y el riesgo de malinterpretar o presentar riesgos para los participantes cuando se comparten datos. Las soluciones potenciales incluyen considerar las expectativas de privacidad de los participantes, definir cuándo los participantes son autores y cuándo sujetos, entender el contexto legal y cultural, minimizar la recolección de datos, asegurar el anonimato y eliminar los metadatos. Las mejores prácticas también involucran la sensibilidad cultural cuando se analizan y reportan los resultados. La adhesión a estos lineamientos puede mitigar los posibles retos y proporcionar información valiosa para los editores, investigadores y comités de ética, permitiéndoles realizar una investigación con rigor científico y responsabilidad ética sobre el MVF para avanzar en este campo creciente de investigación.

Who shall go first? A multicriteria approach to patient selection for first clinical trials of cardiac xenotransplantation.

After achieving sustained graft functioning in animal studies, the next step in the progression of xenotransplantation towards clinical application is the initiation of the first clinical trials. This raises the question according to which criteria patients shall be selected for these trials. While the discussion regarding medical criteria has already commenced, ethical considerations must also be taken into account. This is essential, first, to establish a procedure that is ethically reasonable and justified. Second, it is a prerequisite for a publicly acceptable and comprehensible implementation. This paper outlines a multicriteria approach for the selection of patients in first-in-human clinical trials of cardiac xenotransplantation with four ethical criteria: medical need, capacity to benefit, patient choice and compliance (as an exclusion criterion). Consequently, these criteria identify a primary target group of patients who exhibit a high medical need for cardiac xenotransplantation, face a high risk of morbidity and mortality without an organ replcaement therapy, have a substantial chance of benefiting from xenotransplantation, thereby also enhancing the scientific value of the trial, and qualify for an allotransplant to have a real choice between participating in a first-in-human xenotransplantation trial and waiting for a human organ. A secondary group would include patients for whom only the first two criteria are met, that is, who have a high medical need and a good capacity to benefit from xenotransplantation but who have a restricted choice because they do not qualify for an allotransplant.

An enquiry into the usefulness of an information portal for Deaf and hard of hearing people prior to x-ray examinations and improvement ideas.

INTRODUCTION: Healthcare information resources are extremely limited currently in Irish Sign Language and studies of the preferred methods of gaining information in the Deaf and hard of hearing (DHH) community are scarce. This study aims to explore the opinions of DHH people on an information portal designed for a radiology department, taking account of their preferred methods of gaining information and past experiences of participants that may be addressed by a portal of this kind. These opinions inform the overall objective of creating a template for further improvements to the portal. METHODS: An information portal containing what to expect before, during and after a chest x-ray examination was created. Ethical approval was granted to interview 11 DHH adults via zoom and in person to explore their opinions of an information portal's value prior to chest x-ray examinations. The preferred media type for obtaining information prior to x-ray examinations was also explored. Interview methods reflected the heterogeneity of DHH people's communication methods. Transcripts of the study were analysed using qualitative thematic analysis. RESULTS: The resultant themes from the study were; positives of the information portal as it stands, feelings, pitfalls of the information portal, accessibility considerations, d/Deaf awareness, previous issues that may be helped by the information portal, improvement suggestions and further developments. The majority of participants preferred the subtitled video over other media types. Participants felt they would have been better prepared for their x-ray if they had used the information portal prior, and it would have increased their ability to give informed consent. Participants highlighted experiences of audism in radiology departments and cited the need for healthcare worker's deaf awareness to be improved. Improvements to the information portal were provided by participants. CONCLUSION: The idea of this information portal was supported by the participants. Increased deaf awareness particularly in healthcare workers will improve this resource and improve patient experiences in radiology. IMPLICATIONS FOR PRACTICE: A national policy is needed to implement accessible information in radiology departments to improve the provision of medical autonomy. This policy should be supported by ISL interpreters.

Incidental findings in research brain MRI: Definition, prevalence and ethical implications.

Radiological incidental findings (IFs) are previously undetected abnormalities which are unrelated to the original indication for imaging and are unexpectedly discovered. In brain magnetic resonance imaging (MRI), the prevalence of IFs is increasing. By reviewing the literature on IFs in brain MRI performed for research purposes and discussing ethical considerations of IFs, this paper provides an overview of brain IF research results and factors contributing to inconsistencies and considers how the consent process can be improved from an ethical perspective. We found that despite extensive literature regarding IFs in research MRI of the brain, there are major inconsistencies in the reported prevalence, ranging from 1.3% to 99%. Many factors appear to contribute to this broad range: lack of standardised definition, participant demographics variance, heterogenous MRI scanner strength and sequences, reporter variation and results classification. We also found significant discrepancies in the review, consent and clinical communication processes pertaining to the ethical nature of these studies. These findings have implications for future studies, particularly those involving artificial intelligence. Further research, particularly in relation to MRI brain IFs would be useful to explore the generalisability of study results.

Does implementing opt-out solve the organ shortage problem? Evidence from a synthetic control approach.

In light of the persistent shortage of organ donations needed to save precious human lives, several countries have modified their organ donation laws by introducing an opt-out system, making every deceased a potential organ donor unless the person has objected. This study examines the impact of adopting opt-out on organ donation rates. Using a panel dataset covering a 21-year period, I apply a synthetic control approach to focus on countries that changed their prevailing organ donation legislation from opt-in to opt-out. I compare them to a synthetic counterfactual from countries that have kept their legislation the same since 1999. Synthetic control estimates show that Argentina and Wales achieved substantially higher organ donation rates with the shift from an opt-in to an opt-out system than without the reform taking place. My findings suggest that as one strategy among others, implementing opt-out cannot solve the organ shortage problem entirely but effectively contributes to reducing it considerably.

Bibliometric analysis of publications that cited the CIOMS 2016 "International ethical guidelines for health-related research involving humans".

The CIOMS book "International Ethical Guidelines for Health-related Research Involving Humans", published in 2016 (IEG2016), provides information to assist research ethics committee members and research practitioners with pragmatically implementing ethical considerations while planning and conducting their research. To identify which aspects of research IEG2016 has had the greatest impact since its publication, we analyzed metadata from 942 papers that cited IEG2016 (English language title only) from Web of Science (WoS, Clarivate). Using VOSviewer, we mapped the co-occurrence of keywords to derive the network of all keywords that co-occurred at least five times in the set of citing papers. We found that the keywords ethics, research ethics, informed consent, and clinical trials had high co-occurrence scores in this set of publications. Strong links were also observed between ethics, research ethics, and informed consent. We identified fifteen human-related (HR) keyword nodes in this keyword network. Analysis of the subset of 273 IEG2016-citing articles containing these fifteen HR keywords showed later-date publications were focused on the youngest humans (children, adolescents, young people, minors) and the humans typically responsible for those youngest humans, namely women and parents. Seventy-nine of the 110 networked countries/regions associated with IEG2016-citing articles were home to HR keyword articles. We conclude that IEG2016 has had significant impact in health and medical science literature and has served as a foundation for health-related research around the world in the areas of ethics, informed consent, and research ethics and the linkage of these topics to under-represented populations in such research.

Postmortem fertilization: New Italian government guidelines affirm the legitimacy of this procedure.

Although posthumous reproduction (PHR) is viewed unfavorably by some, it may be a desirable option for subjects whose partners died before they could complete their family planning. With particular regard to posthumous embryo implantation, questions arise regarding the definition of "conception" when a couple undergoes in vitro fertilization while both are alive, but the embryo is implanted in a woman's womb after one parent has died. In accordance with Italian Law 40/2004, access to medically assisted reproduction is contingent upon the survival of both partners in a couple. The legislative prohibition remains in effect unless the application of the reproductive technique has already resulted in the formation of embryos, and implantation is permitted to uphold "the rights of all the subjects involved, including the conceived", as stated in Article 1 of Law 40/2004. Since the enactment of the legislation, a number of Italian courts have issued rulings on PHR on a case-by-case basis. Recent government guidelines in Italy have sought to balance these considerations, giving due weight to the will of the woman, the potential unborn child, and the previous consent of the donor partner.

Smart mouthguards and contact sport: the data ethics dilemma.

The use of smart mouthguards in contact sports like rugby aims to enhance player safety by providing real-time data on head impacts. These devices, equipped with sensors, measure collision force and frequency, potentially identifying concussions that might go unnoticed during gameplay. The idea is that such enhanced monitoring will enable teams, physicians and other stakeholders to better protect players from the effects of on-pitch injury through immediate detection of head trauma and the long-term provision of player data. While we welcome the move towards a better understanding of the potential harm that contact sports athletes may experience, introducing a new avenue through which information about player performance and health can be collected brings several areas of ethical concern absent from traditional mouthguards. In this paper, we consider four noteworthy areas: device and data efficacy, player choice, the inherent issues of such data's existence and the harmful consequences of this data's usage and exposure. We argue that failing to identify and address the risks associated with smart mouthguards' employment in the elite sporting sphere not only risks the mistreatment and misapplication of player data but may also jeopardise the acceptability of a novel health monitoring method that has the potential to prevent long-term debilitating diseases.

Informed consent and coercion in recruitment advertisements for oocyte donors.

BACKGROUND: As the use of donor eggs for in vitro treatment has increased, both medically affiliated and private donor egg agencies have turned to online advertisements to recruit donors. The American Society for Reproductive Medicine provides recommendations encouraging ethical recruitment of donors, however there is no formal regulation for the informed consent process for egg donor recruitment and compensation. Underrepresentation of risks and targeted financial incentives may pose a risk to the informed consent process. METHODS: Data from online advertisements for egg donors active between January 1 - August 31, 2020, were collected to analyze content related to risks, Covid-19 precautions, donor payment, and desired donor characteristics. Advertisements for egg donors on Google, Craigslist, and social media were analyzed. Primary outcomes included the mention of the risks of egg donation, including the risk of Covid-19 exposure, in donor egg advertisements. Secondary outcomes included language targeting specific donor characteristics and financial compensation. RESULTS: 103 advertisements were included. 35.9% (37/103) of advertisements mentioned some risk of the egg donation process, and 18.5% (19/103) mentioned risks or precautions related to Covid-19 exposure. Of advertisements for private donor egg agencies, 40.7% (24/59) mentioned any risk, compared to 29.6% (13/44) of medically affiliated egg donation programs; the difference was not statistically significant (p-value = 0.24). Agencies targeting students and donors of a specific race were more likely to offer payments over $10,000 for an egg donation cycle. Among advertisements offering over $20,000 for donor compensation, 72.7% (8/11) recruited women under the age of 21. CONCLUSION: Egg donor recruitment advertisements, for both medically affiliated programs and private agencies, were unlikely to mention risks including the risk of exposure to Covid-19. Non-medically affiliated private donor egg agencies were more likely to violate multiple American Society for Reproductive Medicine ethics guidelines, including offering higher than average compensation, and recruiting donors from young and vulnerable populations.

The effect of subjective understanding on patients' trust in AI pharmacy intravenous admixture services.

Introduction: Medical services are getting automated and intelligent. An emerging medical service is the AI pharmacy intravenous admixture service (PIVAS) that prepares infusions through robots. However, patients may distrust these robots. Therefore, this study aims to investigate the psychological mechanism of patients' trust in AI PIVAS. Methods: We conducted one field study and four experimental studies to test our hypotheses. Study 1 and 2 investigated patients' trust of AI PIVAS. Study 3 and 4 examined the effect of subjective understanding on trust in AI PIVAS. Study 5 examined the moderating effect of informed consent. Results: The results indicated that patients' reluctance to trust AI PIVAS (Studies 1-2) stems from their lack of subjective understanding (Study 3). Particularly, patients have an illusion of understanding humans and difficulty in understanding AI (Study 4). In addition, informed consent emerges as a moderating factor, which improves patients' subjective understanding of AI PIVAS, thereby increasing their trust (Study 5). Discussion: The study contributes to the literature on algorithm aversion and cognitive psychology by providing insights into the mechanisms and boundary conditions of trust in the context of AI PIVAS. Findings suggest that medical service providers should explain the criteria or process to improve patients' subjective understanding of medical AI, thus increasing the trust in algorithm-based services.

Ethical analysis of informed consent methods in longitudinal cohort studies: A Chinese perspective.

In longitudinal cohort studies involving large populations over extended periods, informed consent entails numerous urgent challenges. This paper explores challenges regarding informed consent in long-term, large-scale longitudinal cohort studies based on the longitudinal and dynamic nature of such research. It analyzes and evaluates widely recognized broad consent and dynamic consent methods, highlighting limitations concerning their ability to adapt to evolving research objectives and participant perspectives. This paper discusses trust-based informed consent and emphasizes the needs to establish and maintain trust with research participants and to balance information disclosure with respect for participants' autonomy. Informed consent in long-term studies is an evolving process that must adapt to changing research environments. Based on participant trust, researchers should observe and assess potential research risks. Finally, the paper recommends enhancing institutional credibility, implementing reconsent procedures, and ensuring robust ethical oversight to safeguard participants' rights despite the complexity of modern biomedical research.

Prescribing Information: Elizabeth B. Connell, the Pill, and the (Woman) Patient's Peace of Mind.

Throughout the 1970s and 1980s, commercialized reproductive technologies experienced a reputational crisis as news about the hormonal birth control pill's possible side effects reportedly caused 18-30% of women to stop taking it. While secondary literature has followed patients' and legislatures' actions, few histories have focused on physicians' responses. How did physicians manage this public crisis of confidence? This article contributes to existing literature through a backstage look at the work of Elizabeth B. Connell (1925-2018), whose wide-ranging career in medicine, academia, government, industry consulting, and popular writing embroiled her at the center of these controversies. To counter critique from legislatures and consumer reformers, Connell became a mediator for medicine in the public sphere, dispensing select information and arguing for limits on others - for the patient's sake. If legislative inquiry's primary havoc was unleashing information, Connell would help the profession moderate it. Because Connell was a woman doctor whom health feminists who were her contemporaries denied was a feminist doctor, the existing scholarship has occluded her. This article reconstructs the contributions of this important and flawed doctor, illuminating how she contorted herself to suit her various public messages, constrained by her conflicting, dual identities as woman and doctor.

[New recommendations on palliative sedation]. / Neue Empfehlungen zur palliativen Sedierung.

Palliative sedation aims to relieve refractory suffering in patients with life-limiting disease. The 2009 framework on palliative sedation of the European Association for Palliative Care (EAPC) has recently been updated. Recommendations have also been formulated by the research group SedPall in Germany. This article describes the social and ethical complexity of decision-making and summarises the recommendations. Patient autonomy is emphasised. Refractoriness of the suffering should be determined jointly by physician and patient. Sedation should be proportional, that is to say, its form and duration should be adapted to the patient's individual situation. The decision on palliative sedation and that on hydration involve two separate decision-making processes. Midazolam should be used as first choice. Particular attention should be paid to the patient's relatives/significant others and the treating team.