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AbstractDespite broad ethical consensus supporting developmentally appropriate disclosure of health information to older children and adolescents, cases in which parents and caregivers request nondisclosure continue to pose moral dilemmas for clinicians. State laws vary considerably regarding adolescents' rights to autonomy, privacy, and confidentiality, with many states not specifically addressing adolescents' right to their own healthcare information. The requirements of the 21st Century Cures Act have raised important ethical concerns for pediatricians and adolescent healthcare professionals regarding the protection of adolescent privacy and confidentiality, given requirements that chart notes and results be made readily available to patients via electronic portals. Less addressed have been the implications of the act for adolescents' access to their health information, since many healthcare systems' electronic portals are available to patients beginning at age 12, sometimes requiring that the patients themselves authorize their parents' access to the same information. In this article, we present a challenging case of protracted disagreement about an adolescent's right to honest information regarding his devastating prognosis. We then review the legal framework governing adolescents' rights to their own healthcare information, the limitations of ethics consultation to resolve such disputes, and the potential for the Cures Act's impact on electronic medical record systems to provide one form of resolution. We conclude that although parents in cases like the one presented here have the legal right to consent to medical treatment on their children's behalf, they do not have a corresponding right to direct the withholding of medical information from the patient.

A healthcare center widely sharing its internal guidelines on how to treat COVID-19 patients "just wasn't done." As the pandemic raged at a Boston hospital, the next generation of clinical leaders pushed for change., Competing Interests: EK No competing interests declared, (© 2022, Kim.)

Competing Interests: Competing interests: CE is an employee of Oxford PharmaGenesis, which founded and supports Open Pharma.

Competing Interests: Competing interests: We have read and understood BMJ policy on declaration of interests and have no interests to declare.

Scientific excellence is a necessity for progress in biomedical research. As research becomes ever more international, establishing international collaborations will be key to advancing our scientific knowledge. Understanding the similarities in standards applied by different nations to animal research, and where the differences might lie, is crucial. Cultural differences and societal values will also contribute to these similarities and differences between countries and continents. Our overview is not comprehensive for all species, but rather focuses on non-human primate (NHP) research, involving New World marmosets and Old World macaques, conducted in countries where NHPs are involved in neuroimaging research. Here, an overview of the ethics and regulations is provided to help assess welfare standards amongst primate research institutions. A comparative examination of these standards was conducted to provide a basis for establishing a common set of standards for animal welfare. These criteria may serve to develop international guidelines, which can be managed by an International Animal Welfare and Use Committee (IAWUC). Internationally, scientists have a moral responsibility to ensure excellent care and welfare of their animals, which in turn, influences the quality of their research. When working with animal models, maintaining a high quality of care ("culture of care") and welfare is essential. The transparent promotion of this level of care and welfare, along with the results of the research and its impact, may reduce public concerns associated with animal experiments in neuroscience research., Competing Interests: Declaration of Competing Interest The authors declare no competing financial interests., (Copyright © 2020 The Author(s). Published by Elsevier Inc. All rights reserved.)

Background: Information has been identified as a commonly unmet supportive care need for those living with cancer (ie, patients and their friends and family). The information needed to help individuals plan their lives around the consequences of cancer, such as the receipt of health care, is an example of an important informational need. A suitable theory to guide the development of interventions designed to meet this informational need has not been identified by the authors., Objective: The aim of this study is to generate a grounded theory capable of guiding the development of interventions designed to assist those living with cancer in meeting their informational needs., Methods: Classic grounded theory was used to analyze data collected through digitally recorded one-on-one audio interviews with 31 patients with cancer and 29 friends and family members. These interviews focused on how the participants had accessed and used information to plan their lives and what barriers they faced in obtaining and using this information., Results: The theory that emerged consisted of 4 variables: personal projects, cancer as a source of disruption to personal projects, information as the process of accessing and interpreting cancer-related data (CRD) to inform action, and CRD quality as defined by accessibility, credibility, applicability, and framing. CRD quality as a moderator of personal project disruption by cancer is the core concept of this theory., Conclusions: Informational resources providing accessible, credible, applicable, and positively framed CRD are likely key to meeting the information needs of those affected by cancer. Web-based informational resources delivering high-quality CRD focused on assisting individuals living with cancer in maintaining and planning their personal projects are predicted to improve quality of life. Research is needed to develop and integrate resources informed by this theoretical framework into clinical practice., (©Maclean Thiessen, Shane Sinclair, Patricia A Tang, Shelley Raffin Bouchal. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 29.10.2020.)

After the initial emergency responses deployed to control the coronavirus disease 2019 (COVID-19) pandemic in the first half of 2020, we should now start thinking about long-term strategies and concepts for pandemic and disaster governance such as resilience. In this context, COVID-19 health care and education are especially important because they are essential public goods that determine what kind of a society we live in, during the pandemic and afterward. So for, the focus has been a tactical efficiency perspective that prioritized instrumental, logistical, or pragmatic aspects in planetary health and university education, with much less attention paid to social justice, history of inequity, and power asymmetries that affect the pandemic impacts in society. For a resilient COVID-19 response, we need to address not only medical, technical, and logistical challenges, but also the social disparities that are inherited from the prepandemic world that are negatively affecting the current pandemic outcomes.

Competing Interests: Competing interests: RMJ has no competing interests. PD has received travel funds from the European Respiratory Society (2012) and Uppsala Monitoring Center (2018); he has received grants from the Laura and John Arnold Foundation (2017-21), American Association of Colleges of Pharmacy (2015), Patient-Centered Outcomes Research Institute (2014-16), Cochrane Methods Innovations Fund (2016-18), and UK National Institute for Health Research (2011-14); and he is an editor at The BMJ and an unpaid member of the Reagan-Udall Foundation for the FDA. DH is a cofounder of RxISK.org, an adverse event reporting website. He has been one of a team involved in a notable data transparency exercise, the Restoration of Study 329. DH has a further conflict: while a supporter of vaccines, he is not minded to take a covid-19 vaccine whose data are not fully available and will review the options for any legal challenge to force him to take a vaccine whose data are not fully available.

Background: Today, telehealth is experiencing exponential growth in utilization. Paralleling this trend is the growth in the telehealth industry, with sharp increases in the number of platforms, functionalities, and levels of integrations within both the electronic health record and other technical systems supporting health care. When a telehealth network is intended to be used across independent health care systems, an additional layer of complexity emerges. In the context of regionalized telehealth networks that are not within the same health care system, not only are technical interoperability challenges a practical barrier, but administrative, clinical, and competitive elements also quickly emerge, resulting in fragmented, siloed technologies., Objective: The study aimed to describe a statewide approach to deploying an interoperable open access telehealth network across multiple health systems., Methods: One promising solution to the abovementioned concerns is an open access telehealth network. In the field of telehealth, an open access network (OAN) can be defined as a network infrastructure that can be used by health care providers without a closed or proprietary platform, specific obligatory network, or service-specific telehealth technologies. This framework for the development of an OAN is grounded in practical examples of clinical programs that function in each stage of network maturity based on the experience of the South Carolina Telehealth Alliance (SCTA). The SCTA's experience details successes and challenges in an ongoing effort to achieve an OAN. The model describes an OAN in stages of collaborative maturity and provides insights into the technological, clinical, and administrative implications of making the collaboration possible., Results: The four stages of an OAN are defined according to operational maturity, ranging from feasibility to demonstration of implementation. Each stage is associated with infrastructure and resource requirements and technical and clinical activities. In stage 1, technical standards are agreed upon, and the clinical programs are designed to utilize compliant technologies. In stage 2, collaboration is demonstrated through technical teams working together to address barriers, whereas clinical and administrative teams share best practices. In stage 3, a functional interoperable network is demonstrated with different institutions providing service through common telehealth end points at different patient care sites. In stage 4, clinical workflows are streamlined and standardized across institutions, and economies of scale are achieved through technical and administrative innovations., Conclusions: The approach to OAN development described provides a roadmap for achieving a functional telehealth network across independent health systems. The South Carolina experience reveals both successes and challenges in achieving this goal. The next steps toward the development of OANs include advocacy and ongoing engagement with the developers of telehealth technologies regarding their commitment to interoperability., (©Kathryn King, Dee Ford, Michael Haschker, Jillian Harvey, Ryan Kruis, James McElligott. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 22.05.2020.)

Background: Internationally, patient access to notes is increasing. This has been driven by respect for patient autonomy, often recognised as a primary tenet of medical ethics: patients should be able to access their records to be fully engaged with their care. While research has been conducted on the impact of patient access to outpatient and primary care records and to patient portals, there is no such review looking at access to hospital medical records in real time, nor an ethical analysis of the issues involved in such a change in process., Methods: This study employed a systematic review framework in two stems, to integrate literature identified from two searches: Medline, CINAHL and Scopus databases were conducted, (for (1) hospitalised patients, patient access to records and its effects on communication and trust within the doctor-patient relationship; and (2) patient access to medical records and the ethical implications identified). The qualitative and quantitative results of both searches were integrated and critically analysed., Results: 3954 empirical and 4929 ethical studies were identified; 18 papers representing 16 studies were identified for review (12 empirical and 6 ethical). The review reveals a consensus that our current approach to giving information to patients - almost exclusively verbally - is insufficient; that patient access to notes is a welcome next step for patient-centred care, but that simply allowing full access, without explanation or summary, is also insufficient. Several ethical implications need to be considered: increased information could improve patient trust and knowledge but might transfer an (unwelcome) sense of responsibility to patients; doctors and patients have conflicting views on how much information should be shared and when; sharing written information might increase the already significant disparity in access to health care, and have unforeseen opportunity costs. The impact on medical practice of sharing notes in real time will also need to be evaluated., Conclusions: The review presents encouraging data to support patient access to medical notes. However, sharing information is a critical part of clinical practice; changing how it is done could have significant empirical and ethical impacts; any changes should be carefully evaluated.

Background: Sharing de-identified individual-level health research data is widely promoted and has many potential benefits. However there are also some potential harms, such as misuse of data and breach of participant confidentiality. One way to promote the benefits of sharing while ameliorating its potential harms is through the adoption of a managed access approach where data requests are channeled through a Data Access Committee (DAC), rather than making data openly available without restrictions. A DAC, whether a formal or informal group of individuals, has the responsibility of reviewing and assessing data access requests. Many individual groups, consortiums, institutional and independent DACs have been established but there is currently no widely accepted framework for their organization and function., Main Text: We propose that DACs, should have the role of both promotion of data sharing and protection of data subjects, their communities, data producers, their institutions and the scientific enterprise. We suggest that data access should be granted by DACs as long as the data reuse has potential social value and provided there is low risk of foreseeable harms. To promote data sharing and to motivate data producers, DACs should encourage secondary uses that are consistent with the interests of data producers and their own institutions. Given the suggested roles of DACs, there should be transparent, simple and clear application procedures for data access. The approach to review of applications should be proportionate to the potential risks involved. DACs should be established within institutional and legal frameworks with clear lines of accountability, terms of reference and membership. We suggest that DACs should not be modelled after research ethics committees (RECs) because their functions and goals of review are different from those of RECs. DAC reviews should be guided by the principles of public health ethics instead of research ethics., Conclusions: In this paper we have suggested a framework under which DACs should operate, how they should be organised, and how to constitute them.

This article adds to the literature on ethics in digital research by problematizing simple understandings of what constitutes "publicly available data," thereby complicating common "consent waiver" approaches. Based on our recent study of representations of family life on Instagram, a platform with a distinct visual premise, we discuss the ethical challenges we encountered and our practices for moving forward. We ground this in Lauren Berlant's concept of "intimate publics" to conceptualize the different understandings of "publics" that appear to be at play. We make the case for a more reflexive approach to social media research ethics that builds on the socio-techno-ethical affordances of the platform to address difficult questions about how to determine social media users' diverse, and sometimes contradictory, understandings of what is "public."

Open data is information made freely available to third parties in structured formats without restrictive licensing conditions, permitting commercial and noncommercial organizations to innovate. In the context of National Health Service (NHS) data, this is intended to improve patient outcomes and efficiency. EBM DataLab is a research group with a focus on online tools which turn our research findings into actionable monthly outputs. We regularly import and process more than 15 different NHS open datasets to deliver OpenPrescribing.net, one of the most high-impact use cases for NHS England's open data, with over 15,000 unique users each month. In this paper, we have described the many breaches of best practices around NHS open data that we have encountered. Examples include datasets that repeatedly change location without warning or forwarding; datasets that are needlessly behind a "CAPTCHA" and so cannot be automatically downloaded; longitudinal datasets that change their structure without warning or documentation; near-duplicate datasets with unexplained differences; datasets that are impossible to locate, and thus may or may not exist; poor or absent documentation; and withholding of data for dubious reasons. We propose new open ways of working that will support better analytics for all users of the NHS. These include better curation, better documentation, and systems for better dialogue with technical teams., (©Seb John Bacon, Ben Goldacre. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 13.01.2020.)

In response to the 2013-2016 Ebola virus disease (EVD) outbreak primarily affecting Guinea, Sierra Leone, and Liberia, the World Health Organization (WHO) set out Guidance for Managing Ethical Issues in Infectious Disease Outbreaks , which covered social distancing, research in outbreak settings, and clinical care. This article assesses the Guidance 's recommendations on research and long-term storage of biological specimens during infectious disease outbreaks and argues that the Guidance does not provide adequate direction for responders', researchers', and organizations' actions. It considers local persons' access to benefits of research in the aftermath of outbreaks and preparedness for outbreaks, drawing on lessons from both the 2013-2016 EVD outbreak and ongoing research in the Democratic Republic of the Congo., (© 2020 American Medical Association. All Rights Reserved.)

Competing Interests: Competing interests: Shaun Mehta is a part-time medical advisor for Dot Health. No other competing interests were declared.

In 2014, the Heart Failure Association (HFA) of the European Society of Cardiology (ESC) founded the first open access journal focusing on heart failure, called ESC Heart Failure (ESC-HF). In the first 5 years, in ESC-HF we published more than 450 articles. Through ESC-HF, the HFA gives room for heart failure research output from around the world. A transfer process from the European Journal of Heart Failure to ESC-HF has also been installed. As a consequence, in 2018 ESC-HF received 289 submissions, and published 148 items (acceptance rate 51%). The journal is listed in Scopus since 2014 and on the PubMed website since 2015. In 2019, we received our first impact factor from ISI Web of Knowledge / Thomson-Reuters, which is 3.407 for 2018. This report reviews which papers get best cited. Not surprisingly, many of the best cited papers are reviews and facts & numbers mini reviews, but original research is also well cited., (© 2019 The Authors. ESC Heart Failure published by John Wiley & Sons Ltd on behalf of the European Society of Cardiology.)

Background: Patient and professional views about the impact of providing full real-time access to the medical record in the in-hospital setting are unknown., Methods: Likert-scale and free-text validated questionnaire survey of physicians and patients from acute medical units in two hospitals. The questionnaire explored recent experiences; views on the formation of trust, and views on sharing either the entire medical record or a summary., Results: Two-hundred and forty-eight patient questionnaires (62% response rate) and 32 physician questionnaires (21% response rate) were returned. Twenty-seven per cent of patients did not recall being told their diagnosis. Doctors and patients differed on what practices that they believed built trust.Eighty-one per cent of patients supported the idea of having access to the full medical record (for empowerment; the right to information about oneself; as an aide-memoire for discussion). Doctors feared it might provoke anxiety and change the nature of what was written. A written lay summary record was preferred by doctors and patients., Conclusions: The current system of providing information verbally to patients is inadequate. Patients want more information and are less concerned than physicians about potential negative effects of real-time access to their records. Patient access to medical records (in both full and summary forms) should be evaluated., (© 2019 Royal College of Physicians.)

In Spain, the right to clinical information and informed consent as a practical expression of the principle of autonomy, are legal conquests achieved in the late twentieth century. From the law they have been transferred to the codes of medical deontology. The aim of this work is to study the pace of this transfer. Historical review of the different codes of medical deontology in Spain since the Civil War, seeking the presence of these ideas in them. Until code of medical deontology of 1979, the idea of clinical information did not appear in the contemporary deontological norm, and the rules on consent did so in very restricted cases. As of that date, their appearance is progressive in the successive codes. Currently, both concepts are fully developed in Spanish deontological regulations. Medical Deontology has take on the ideas of patient information and informed consent. This has been a long process which have brought considerable changes the deontological orientations of the traditional form of doctor-patient relationship. In these aspects, medical deontology has drifted, from emphasizing the prudence of the doctor, to emphasize the duty to inform and give ample space to the patient's decisions, which he recognizes as an autonomous and reflective moral agent, capable of taking his own decisions about your health.

The number of both print and electronic open access (OA) journals has increased dramatically. Although electronic availability of information on the Internet may offer greater potential for information sharing, it also gives rise to "predatory" journals and deceptive publishers. In this Invited Commentary, the authors describe both the opportunities and potential perils that come with OA publications.Definitions for four models of legitimate OA are provided: the gold model, the green model, the platinum model, and the hybrid model. Benefits and risks of each model are discussed. The authors also distinguish between legitimate OA journals and predatory journals, highlighting several existing tools and resources for distinguishing between the two.Finally, the authors provide a checklist to help authors evaluate the policies and processes of journals and thereby avoid predatory publications.

Introduction: Corruption in the health care system is a universal phenomenon, putting at risk the health of populations. The purpose of this work was to synthesize the international literature on corruption in the health sector., Methods: This is a systematic review of literature dealing with articles on health corruption practices, published between July 2008 and June 2018, via two search engines: PubMed and Google Scholar. The extracted data were narratively summarized in three major areas: defining the concept of corruption in health, its typology / manifestations and anti-corruption interventions., Results: A total of 23 articles were selected for final analysis. The articles that defined health corruption shared two key aspects: "abuse of power" and "benefit". The main types of corruption were "abuse of therapeutic indication", followed by "bribes" and "falsification". The anti-corruption interventions were synthesized into seven types: creation of an independent multi-interventional agency, support for scientific research, law enforcement, awareness raising, detection, reporting and institutional commitment., Conclusion: Based on the use of power, corruption in health is a complex phenomenon whose struggle requires a specific and contextualized strategy integrating information, detection and punishment.

Transparency lies at the heart of the open lab notebook movement. Open notebook scientists publish laboratory experiments and findings in the public domain in real time, without restrictions or omissions. Research on rare diseases is especially amenable to the open notebook model because it can both increase scientific impact and serve as a mechanism to engage patient groups in the scientific process. Here, I outline and describe my own success with my open notebook project, LabScribbles, as well as other efforts included in the openlabnotebooks.org initiative., Competing Interests: The author has declared that there are no competing interests.

Tim Wardle's 2018 documentary film Three Identical Strangers is an exploration of identity, family, and loss. It's also about nature versus nurture and the boundaries of ethically permissible research, particularly research involving children. The film tells the story of identical triplets who were separated soon after birth in 1961. A different family adopted each boy, without being told that their son had two identical brothers. The adoption agency responsible for finding the families was collaborating with a group of researchers working on a study about … something. Three Identical Strangers details the boys' fight to obtain information about the study and for closure. But while the film may have received rave reviews, it left us feeling uneasy. We came away with two sets of questions, one having to do with the story that the film documents and the second with the ethics of filmmaking itself., (© 2019 The Hastings Center.)

The use of donated gametes and embryos in assisted reproduction techniques (ART) makes it necessary to examine interests that involve relevant ethical and legal considerations, which include the autonomy and privacy rights of the intended parents, donors' right to privacy and the right of the minors to know their genetic origin. This article presents arguments to consider policies of more openness to obtain information from donors in order to protect the child's best interest in knowing his/her genetic origins. It concludes with the situation in Mexico, where ART has been carried out with donated gametes since several years ago; however, due to the absence of regulations to control these procedures, each establishment imposes its own criteria for the operation of its programs., (Copyright: © 2019 SecretarÍa de Salud.)

Data-sharing is a desired default in the field of public health and a source of much ethical deliberation. Sharing data potentially contributes the largest, most efficient source of scientific data, but is fraught with contextual challenges which make stakeholders, particularly those in under-resourced contexts hesitant or slow to share. Relatively little empirical research has engaged stakeholders in discussing the issue. This study sought to explore relevant experiences, contextual, and subjective explanations around the topic to provide a rich and detailed presentation of what it means to different stakeholders and contexts to share data and how that can guide practice and ethical guidance. A qualitative design involving interviews was undertaken with professionals working in public health institutions endowed with data (HDSS), ethics committees, and advisory agencies which help shape health research in Africa. A descriptive form of thematic analysis was used to summarize results into six key themes: (1) The role of HDSSs in research using public health data and data-sharing; (2) Ownership and funding are critical factors influencing data-sharing; (3) Other factors discourage data-sharing; (4) Promoting and sustaining data-sharing; (5) Ethical guidance structures; and (6) Establishing effective guidance. The themes reveal factors regarding the willingness or not to share and an intricate ethical system that current discourse could reflect. Many of the concerns resonate with the literature, but a whole other gamut of people and process issues; commitments, investments, careers, and the right ethical guidance are needed to realize a sustainable goal of reaching 'share' as a default., (© 2017 John Wiley & Sons Ltd.)

In France, genetic data are not covered by property laws. They are considered to be equivalent to a part of the human body, to be protected rather than as something of economic value. However, in this highly competitive world, France must find solutions to increase the scientific and economic values of its genetic data. One possibility would be to define genetic data as raw information with no value for use. The choice of such a value of use (clinical, scientific, economic, etc.), following various key analysis and treatment processes will thus transform genetic data into useful information. In this case, and under certain conditions, intellectual property law could consider this information to be an original creation with an economic value, whilst maintaining current levels of protection for genetic data. France thus faces a choice between changing its laws concerning the protection of genetic data, bringing them into line with the North American approach, according to which data are a form of capital that everyone has the right to increase or sell, and making the distinction between genetic data and information clearer., (© 2018 médecine/sciences – Inserm.)

Currently, there is a growing interest in ensuring the transparency and reproducibility of the published scientific literature. According to a previous evaluation of 441 biomedical journals articles published in 2000-2014, the biomedical literature largely lacked transparency in important dimensions. Here, we surveyed a random sample of 149 biomedical articles published between 2015 and 2017 and determined the proportion reporting sources of public and/or private funding and conflicts of interests, sharing protocols and raw data, and undergoing rigorous independent replication and reproducibility checks. We also investigated what can be learned about reproducibility and transparency indicators from open access data provided on PubMed. The majority of the 149 studies disclosed some information regarding funding (103, 69.1% [95% confidence interval, 61.0% to 76.3%]) or conflicts of interest (97, 65.1% [56.8% to 72.6%]). Among the 104 articles with empirical data in which protocols or data sharing would be pertinent, 19 (18.3% [11.6% to 27.3%]) discussed publicly available data; only one (1.0% [0.1% to 6.0%]) included a link to a full study protocol. Among the 97 articles in which replication in studies with different data would be pertinent, there were five replication efforts (5.2% [1.9% to 12.2%]). Although clinical trial identification numbers and funding details were often provided on PubMed, only two of the articles without a full text article in PubMed Central that discussed publicly available data at the full text level also contained information related to data sharing on PubMed; none had a conflicts of interest statement on PubMed. Our evaluation suggests that although there have been improvements over the last few years in certain key indicators of reproducibility and transparency, opportunities exist to improve reproducible research practices across the biomedical literature and to make features related to reproducibility more readily visible in PubMed., Competing Interests: The authors have declared that no competing interests exist.

The organ transplantation enterprise is morally flawed. "Brain-dead" donors are the primary source of solid vital organs, and the transplantation enterprise emphasizes that such donors are dead before organs are removed-or in other words that the dead donor rule is followed. However, individuals meeting standard diagnostic criteria for brain death-unresponsiveness, brainstem areflexia, and apnea-are still living, from a physiological perspective. Therefore, removing vital organs from a heart-beating, mechanically ventilated donor is lethal. But neither donors nor surrogates nor the public in general are typically informed of this obviously relevant information. Therefore, donors or surrogates do not provide valid consent for a lethal medical procedure. This is a serious moral failing on the part of the transplant community. To address this concern, I advocate for accurate and fully transparent communication of information to the public to allow for an informed civic dialogue about the ethics and legality of lethal organ procurement. Furthermore, I advocate that systems be put in place by the transplant community to allow for valid consent for lethal organ procurement., (© 2018 The Hastings Center.)

In this article, we identify and discuss several ethically problematic aspects of open access scientific publishing. We conclude that, despite some positive effects, paid open access has at least three unethical aspects: it discriminates against researchers, creates an editorial conflict of interest, and diverts funding from the actual conduct of research. To be truly open access, all researchers must be able to access its benefits.

Background: Anonymity remains the more common practice in gamete donations, but legislation prohibiting anonymity with a goal of protecting donor-conceived children's right to know their genetic origins is becoming more common. However, given the dearth of research investigating the function of anonymity for donors and recipients, it is unclear whether these policies will accomplish their goals. The aim of this study was to explore experiences with anonymity among oocyte donors and recipients who participated in an anonymous donor oocyte program and to understand the ways in which anonymity functions for them., Methods: Semistructured interviews were conducted with 50 women: 28 oocyte donors and 22 recipients who were recruited from an academic center for reproductive medicine in the United States., Results: Donors and recipients view anonymity both as a mechanism to protect the interests of all parties (recipients, donors, and donor-conceived children) and as a point of conflict. Specifically, three key areas were identified where both donors and recipients saw anonymity as having an important role: relieving anxieties about family structures and obligations; protecting their interests and those of donor-conceived children (while acknowledging where interests conflict); and managing the future., Conclusion: As gamete donation increasingly moves away from the practice of anonymity, examining why anonymity matters to stakeholders will be helpful in devising strategies to successfully implement identity-release options.

Genealogical databases have provided links to possible perpetrators of crimes in several cold cases in the US. This commentary discusses some of the ethical issues associated with this approach while recognising the underlying value of the identifications., (Crown Copyright © 2018. Published by Elsevier B.V. All rights reserved.)

Medical ethics and related topics such as data protection are often viewed as extraneous encumberments by researchers. However these fields provide guidelines for correct conduct and are mostly common sense. This Best Practice Guideline collection will focus on various related aspects pertaining to ethics in publication, and this paper will outline the key points in each of these papers in the collection., (Copyright © 2018 Elsevier B.V. All rights reserved.)

This paper reviews the court-released discovery documents obtained from litigation against Monsanto over its herbicide Roundup and through Freedom of Information Act requests (requests to regulatory agencies and public universities in the United States). We sought evidence of corporate malfeasance and undisclosed conflicts of interest with respect to issues of scientific integrity. The findings include evidence of ghostwriting, interference in journal publication, and undue influence of a federal regulatory agency.

Research on emerging infectious diseases calls for a work on collections of pathogens (including hosts or vectors from which the pathogens were isolated), related to human and animal health, to wildlife or on the environmental material. In this respect, the adoption of a One Health perspective is determined by the need for a common approach to consider the collection, storage and use of pathogens coming from human or non-human sources, and particularly when the same pathogen is taken from different environments. In response to this development, our purpose is to delineate a flexible regulation framework concerning collections of pathogens from various origins or hosts and their associated data in order to facilitate scientific work and research partnerships. The legal and ethical cutting-edge research on Biomedical Big Data is particularly stimulating when it comes to address challenges related to collections or biobanks of pathogens such as prior informed consent and accessibility, Material Transfer Agreement or benefit sharing.

This document discusses the ethical implications of informing offspring about their conception using gamete or embryo donation. It replaces the 2013 ASRM Ethics Committee document of the same name (Fertil Steril 2013;100:45-9)., (Copyright © 2018 American Society for Reproductive Medicine. Published by Elsevier Inc. All rights reserved.)