BMC Medical Ethics is an open access journal publishing original peer-reviewed research articles in relation to medical ethics, heathcare and bioethics.

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  • A qualitative study on aspects of consent for genomic research in communities with low literacy

    Daima Bukini; Columba Mbekenga; Siana Nkya; Lisa Purvis; Sheryl McCurdy; Michael Parker; Julie Makani (BMC, 2020-06-01)
    Abstract Background Low literacy of study participants in Sub - Saharan Africa has been associated with poor comprehension during the consenting process in research participation. The concerns in comprehension are far greater when consenting to participate in genomic studies due to the complexity of the science involved. While efforts are made to explore possibilities of applying genomic technologies in diseases prevalent in Sub Saharan Africa, we ought to develop methods to improve participants’ comprehension for genomic studies. The purpose of this study was to understand different approaches that can be used to seek consent from individuals with low literacy in Sub-Saharan African countries in genomic research to improve comprehension. Methods Using qualitative study design, we conducted focus-group discussions, in-depth interviews and participant observations as data collection methods. This study was embedded in a hospital based genomic study on Sickle Cell Disease at Muhimbili National Hospital in Tanzania. Thematic content analysis was used to analyse the transcripts and field notes. Results Findings from this study show that literacy level has little influence on understanding the research details. According to the participants of this study, the methods used to provide information, the language, and time spent with the study participants were the key factors influencing understanding. The availability of group sessions held before individual consent to allow for a detailed questions and answers format was agreed to be the best method to facilitate the comprehension. Conclusion The quality of the consenting process of participants will be influence by a number of factors. The type of research consented for, where the research will be implemented and who are the potential study participants are amongst the factors that need to be assessed during the consenting. Measures to improve participants’ comprehension need to be developed when consenting participants with low literacy level in genomic studies.
  • Egyptians' social acceptance and consenting options for posthumous organ donation; a cross sectional study

    Ammal M. Metwally; Ghada A. Abdel-Latif; Lobna Eletreby; Ahmed Aboulghate; Amira Mohsen; Hala A. Amer; Rehan M. Saleh; Dalia M. Elmosalami; Hend I. Salama; Safaa I. Abd El Hady (BMC, 2020-06-01)
    Abstract Background Organ donation has become one of the most effective ways to save lives and improve the quality of life for patients with end-stage organ failure. No previous studies have investigated the preferences for the different consenting options for organ donation in Egypt. This study aims to assess Egyptians’ preferences regarding consenting options for posthumous organ donation, and measure their awareness and acceptance of the Egyptian law articles regulating organ donation. Methods A cross sectional study was conducted among 2743 participants over two years. Each participant was required to rank eleven consenting options from 1 (most preferred) to 11 (least preferred), and to report his awareness and acceptance of the seven articles of the Egyptian law of organ donation. Results 47% of the participants expressed willingness to donate their organs after death. This percentage increased to 78% when consenting options were explained to participants. “Informed consent by donor only” was the most preferred type of consent for one third of respondents. Awareness of the law articles regulating organ donation was relatively low ranging from 56% to 23%. Conclusion Currently, around half of the Egyptian population agree to posthumous organ donation. This percentage could be increased significantly by raising the awareness about how the process of donation could be regulated and how the patient’s right of decision could be protected.
  • No research for the decisionally-impaired mentally ill: a view from Montenegro

    Tea Dakić (BMC, 2020-06-01)
    Abstract Background Many of the important elements of a valid informed consent – comprehension, voluntariness, and capacity – can be compromised or unmet in the context of psychiatric research. The inability to protect their own interests puts mentally ill subjects at an increased likelihood of being wronged or harmed and makes them particularly vulnerable in the context of clinical research. Therefore, they are due extra protection. Sometimes, these additional safeguards can significantly limit the possibilities for research involving subjects deemed unable to consent due to their mental illness. Montenegro, a middle-income country in Southern-Eastern Europe, goes so far in their policy to protect these subjects from harms of research, as to ban all biomedical research on mentally ill persons who are unable to provide consent. Main body Mental health research is often neglected and very low on the list of health research priorities, especially in low- and middle-income countries. Despite the fact that mental health disorders are among leading causes of disability, the need for evidence-based services and interventions for those affected remains unmet. To exclude all members of a certain group of subjects seems extremely restrictive and unnecessary. Such a policy is discriminatory and unethical, because it inflicts further harms and exclusion of those patients from participation in society. This unjust exclusion policy obstructs research of certain psychiatric disorders and implies that new treatments for conditions that directly affect these incapacitated subjects will not be developed. Conclusions Scientific and clinical development must not be precluded by overly restrictive, discriminatory and unjust practices, such as the normative ban on research on decisionally-impaired mentally ill subjects. Rather, there should be a regulative framework that ensures that those who cannot consent for themselves are respected and protected in research, the anticipated benefits maximized, risks minimized, their autonomy recognized and extended. These patient-subjects must be appropriately included unless there is a clear and compelling rationale and justification that inclusion is inappropriate with respect to the health of the participants or the purpose of the research.
  • Self-evaluated ethical competence of a practicing physiotherapist: a national study in Finland

    Kati KULJU; Riitta Suhonen; Pauli Puukka; Anna TOLVANEN; Helena Leino-kilpi (BMC, 2020-05-01)
    Abstract Background Patients have the right to equal, respectful treatment. Nowadays, one third of patient complaints concern health care staff’s behavior towards patients. Ethically safe care requires ethical competence, which has been addressed as a core competence in physiotherapy. It has been defined in terms of character strength, ethical awareness, moral judgment skills in decision-making, and willingness to do good. The purpose of this study was to analyze the ethical competence of practicing physiotherapists. Method A self-evaluation instrument (Physiotherapist’s Ethical Competence Evaluation Tool) based on an analysis of a concept “ethical competence” was constructed in 2016 and physiotherapists (n = 839), working in public health services or private practice responded to the questionnaire. Results Based on the results, most of the physiotherapists evaluated themselves highly ethically competent in all areas of ethical competence, subscales being Strength, Awareness, Skills and Will. Willingness to do good was evaluated as highest, while character strength, including the strength to support ethical processes and speak on behalf of the patient, was evaluated the lowest. Physiotherapists most commonly consult a colleague when encountering an ethical problem. Other methods for problem solving are not very familiar, neither are the international or national ethical codes of conduct. Conclusions This was the first attempt to assess all aspects of ethical competence empirically in a clinical environment in physiotherapy, using a novel self-evaluation instrument. Even if physiotherapists evaluate themselves as competent in ethics, further exploration is needed for ethical awareness. Also the patients’ viewpoints about ethically competent care should be considered, to better ensure ethical safety of the patient.
  • Perceptions of plagiarism by biomedical researchers: an online survey in Europe and China

    Nannan Yi; Benoit Nemery; Kris Dierickx (BMC, 2020-06-01)
    Abstract Background Plagiarism is considered as serious research misconduct, together with data fabrication and falsification. However, little is known about biomedical researchers’ views on plagiarism. Moreover, it has been argued – based on limited empirical evidence – that perceptions of plagiarism depend on cultural and other determinants. The authors explored, by means of an online survey among 46 reputable universities in Europe and China, how plagiarism is perceived by biomedical researchers in both regions. Methods We collected work e-mail addresses of biomedical researchers identified through the websites of 13 reputable universities in Europe and 33 reputable universities in China and invited them to participate in an online anonymous survey. Our questionnaire was designed to assess respondents’ views about plagiarism by asking whether they considered specific practices as plagiarism. We analyzed if respondents in China and Europe responded differently, using logistic regression analysis with adjustments for demographic and other relevant factors. Results The authors obtained valid responses from 204 researchers based in China (response rate 2.1%) and 826 researchers based in Europe (response rate 5.6%). Copying text from someone else’s publication without crediting the source, using idea(s) from someone else’s publication without crediting the source and republishing one’s own work in another language without crediting the source were considered as plagiarism by 98, 67 and 64%, respectively. About one-third of the respondents reported to have been unsure whether they had been plagiarizing. Overall, the pattern of responses was similar among respondents based in Europe and China. Nevertheless, for some items significant differences did occur in disadvantage of Chinese respondents. Conclusions Findings indicate that nearly all biomedical researchers understand (and disapprove of) the most obvious forms of plagiarism, but uncertainties and doubts were apparent for many aspects. And the minority of researchers who did not recognize some types of plagiarism as plagiarism was larger among China-based respondents than among Europe-based respondents. The authors conclude that biomedical researchers need clearer working definitions of plagiarism in order to deal with grey zones.
  • Ethical arguments against coercing provider participation in MAiD (medical assistance in dying) in Ontario, Canada

    Travis Carpenter; Lucas Vivas (BMC, 2020-06-01)
    Abstract It has historically been a crime in Canada to provide assistance to someone in ending their own life, however, this paradigm was inverted in 2015 when the Supreme Court of Canada (SCC) ruled that restrictions on this practice, within certain defined parameters, violated the right to life, liberty, and security of the person. Subsequently, recent legal and policy decisions have highlighted the issue of how to balance the rights of individuals to access MAiD with the rights of care providers to exercise conscience-based objections to participation in this process. We argue that there is significant harm and ethical hazard in disregarding individual and institutional rights to conscientious objection and since measures less coercive than the threat of regulatory or economic sanctions do exist, there should be no justification for such threats in Canada’s health care systems.
  • Exploring the evolution of a dental code of ethics: a critical discourse analysis

    Alexander C. L. Holden (BMC, 2020-06-01)
    Abstract Background What can the analysis of the evolution of a code of ethics tell us about the dental profession and the association that develops it? The establishment of codes of ethics are foundational events in the social history of a profession. Within these documents it is possible to find statements of values and culture that serve a variety of purposes. Codes of ethics in dentistry have not frequently presented as the subjects of analyses despite containing rich information about the priorities and anxieties within the profession’s membership at the time that the code was written. Main text This essay uses critical discourse analysis to explore the 2012 and 2018 versions of the Code of Ethics produced by the New South Wales Branch of the Australian Dental Association. This method of discourse analysis examines contradictions between the discourses within the codes and how these relate to broader social realties that surround the dental profession in New South Wales. By analysing the 2012 and 2018 codes together, it is possible to understand how the dental profession views its commitments to society as established through the social contract. Through this assessment, it will be demonstrated that both codes suffer due to their failure to consider the public as a key stakeholder in the creation and curation of the Code of Ethics and how this this relates intimately with the social contract between the profession and the public. Conclusion Without the public being the central consideration, both codes amount to declarations of professional privilege and dominance. Although the more recent 2018 Code of Ethics demonstrates insight into the changes in public trust placed in the professions, this analysis shows that that the current code of ethics is still reluctant to recognise and engage with the public as an equal stakeholder in the planning and provision of oral health care and the development of the profession’s values and cultural trajectory.
  • Partnering with patients in healthcare research: a scoping review of ethical issues, challenges, and recommendations for practice

    Joé T. Martineau; Asma Minyaoui; Antoine Boivin (BMC, 2020-05-01)
    Abstract Background Partnering with patients in healthcare research now benefits from a strong rationale and is encouraged by funding agencies and research institutions. However, this new approach raises ethical issues for patients, researchers, research professionals and administrators. The main objective of this review is to map the literature related to the ethical issues associated with patient partnership in healthcare research, as well as the recommendations to address them. Our global aim is to help researchers, patients, research institutions and research ethics boards reflecting on and dealing with these issues. Methods We conducted a scoping review of the ethical issues and recommendations associated with partnering with patients in healthcare research. After our search strategy, 31 peer reviewed articles published between 2007 and 2017 remained and were analyzed. Results We have identified 58 first-order ethical issues and challenges associated with patient partnership in research, regrouped in 18 second-order ethical themes. Most of the issues are transversal to all phases and stages of the research process and a lot of them could also apply to patient-partnership in other spheres of health, such as governance, quality improvement, and education. We suggested that ethical issues and challenges of partnered research can be related to four ethical frameworks: 1) Research ethics; 2) Research integrity; 3) Organizational ethics, and 4) Relational ethics. Conclusions We have identified numerous ethical issues associated with the recent approach of patient-partnership in research. These issues are more diverse than the issues associated with a more traditional research approach. Indeed, the current discussion on how we address ethical issues in research is anchored in the assumption that patients, as research participants, must be protected from risk. However, doing research with, and not on, the patient involves changes in the way we reflect on the ethical issues associated with this approach to research. We propose to broaden the ethical discussion on partnered research to not only rely on a research ethics framework, but to also frame it within the areas of research integrity, organizational ethics and relational ethics.
  • Knowledge and attitudes of physicians toward research ethics and scientific misconduct in Lebanon

    Bilal Azakir; Hassan Mobarak; Sami Al Najjar; Azza Abou El Naga; Najlaa Mashaal (BMC, 2020-05-01)
    Abstract Background Despite the implementation of codes and declarations of medical research ethics, unethical behavior is still reported among researchers. Most of the medical faculties have included topics related to medical research ethics and developed ethical committees; yet, in some cases, unethical behaviors are still observed, and many obstacles are still conferring to applying these guidelines. Methods This cross-sectional questionnaire-based study was conducted by interviewing randomly selected 331 Lebanese physicians across Lebanon, to assess their awareness, knowledge and attitudes on practice regarding international and national research ethics guidelines (Lebanese decrees/Laws and CNRS chart of ethics) and scientific misconduct and misbehaviors. Results Our results revealed that although majority of participants declared familiar with ethical principles governing research that involves human subjects (79.5%), the overall mean score achieved on their knowledge questions was 46%. Only 27.4% are aware of the presence of the Lebanese National Consultative Committee on Ethics (LNCCE), with only half of them aware of its functions and only 25.7% know about the charter of ethics and guiding principles of scientific research in Lebanon. Significant higher levels of research ethics knowledge were recorded among Ph.D. degree-holding subjects, higher university positions as in professors, research ethics trainings-attendees, and physicians with prior research experience. A significant correlation was observed between knowledge of research ethics principles and positive attitudes toward research ethics principles. Noteworthy, we found that more than one third of participants have reported witnessing scientific misconduct and misbehaviors at some period of their careers. Conclusions The presence of low mean awareness levels regarding research ethical principles among the study population of physicians and high levels of perception of scientific misconduct raises concern on the importance of implementing proper training for physicians on research ethics.
  • How do 66 European institutional review boards approve one protocol for an international prospective observational study on traumatic brain injury? Experiences from the CENTER-TBI study

    Marjolein Timmers; Jeroen T. J. M. van Dijck; Roel P. J. van Wijk; Valerie Legrand; Ernest van Veen; Andrew I. R. Maas; David K. Menon; Giuseppe Citerio; Nino Stocchetti; Erwin J. O. Kompanje (BMC, 2020-05-01)
    Abstract Background The European Union (EU) aims to optimize patient protection and efficiency of health-care research by harmonizing procedures across Member States. Nonetheless, further improvements are required to increase multicenter research efficiency. We investigated IRB procedures in a large prospective European multicenter study on traumatic brain injury (TBI), aiming to inform and stimulate initiatives to improve efficiency. Methods We reviewed relevant documents regarding IRB submission and IRB approval from European neurotrauma centers participating in the Collaborative European NeuroTrauma Effectiveness Research in Traumatic Brain Injury (CENTER-TBI). Documents included detailed information on IRB procedures and the duration from IRB submission until approval(s). They were translated and analyzed to determine the level of harmonization of IRB procedures within Europe. Results From 18 countries, 66 centers provided the requested documents. The primary IRB review was conducted centrally (N = 11, 61%) or locally (N = 7, 39%) and primary IRB approval was obtained after one (N = 8, 44%), two (N = 6, 33%) or three (N = 4, 23%) review rounds with a median duration of respectively 50 and 98 days until primary IRB approval. Additional IRB approval was required in 55% of countries and could increase duration to 535 days. Total duration from submission until required IRB approval was obtained was 114 days (IQR 75–224) and appeared to be shorter after submission to local IRBs compared to central IRBs (50 vs. 138 days, p = 0.0074). Conclusion We found variation in IRB procedures between and within European countries. There were differences in submission and approval requirements, number of review rounds and total duration. Research collaborations could benefit from the implementation of more uniform legislation and regulation while acknowledging local cultural habits and moral values between countries.
  • A qualitative study on existential suffering and assisted suicide in Switzerland

    Marie-Estelle Gaignard; Samia Hurst (BMC, 2019-05-01)
    Abstract Background In Switzerland, people can be granted access to assisted suicide (AS) on condition that the person whose wish is to die performs the fatal act, that he has his decisional capacity and that the assisting person’s conduct is not selfishly motivated. No restrictions relating to the ground of suffering are mentioned in the act. Existential suffering as a reason for wanting to die, however, gives raise to controversial issues. Moreover, existential suffering lacks definition and no consensus exists on how to evaluate and manage it. This study explores the perspectives of care professionals and volunteers from a “right-to-die organization” on existential suffering as a motive for assisted suicide requests. Methods A qualitative study based on face-to-face interviews was conducted with twenty-six participants: palliative care and primary care providers as well as EXIT right-to-die organization volunteers. Elements from the grounded theory approach were used. Results The twenty-six participants described existential suffering in a multiplicity of individual ways. In total, sixty-three stories were recounted. Their representations were grouped into eight categories: physical decline and its consequences, loneliness, fear of the future, life is over, loss of social significance, loss of hope for a better future, being a financial burden and loss of pleasurable activities. According to all participants, suffering coming from the loss of self-identity was always linked to physical decline, as if one’s image completely defined someone’s identity. Society’s perception of old people and vulnerable people were also often questioned. Another interesting point was that only four stories referring to a “pure” existential suffering were found. This suffering was related to a feeling that life has come to an end, without identification of any other related restriction or suffering. Conclusions Existential suffering is multifaceted. Legislators and right-to-die organisations have to address the question of what make a AS acceptable. The plurality of existential suffering implies the need of a very personalized care. A better understanding of what it is made of could provide a “toolbox” to people concerned by these requests, helping them to explore it in order to offer suffering people a wider range of alternatives.
  • Ethical challenges regarding the use of stem cells: interviews with researchers from Saudi Arabia

    Ghiath Alahmad; Sarah Aljohani; Muath Fahmi Najjar (BMC, 2020-05-01)
    Abstract Background With the huge number of patients who suffer from chronic and incurable diseases, medical scientists continue to search for new curative methods for patients in dire need of treatment. Interest in stem cells is growing, generating high expectations in terms of the possible benefits that could be derived from stem cell research and therapy. However, regardless of the hope of stem cells changing and improving lives, there are many ethical, religious, and political challenges and controversies that affect the research, and mandated to establish ethical guidelines and regulations. In Saudi Arabia, key stakeholders play an active role in discussing the ethics of stem cell research and therapy. The focus of the study was to explore professionals’ perceptions related to the ethical challenges of using stem cells in research and treatment in Saudi Arabia. Results A qualitative research study was conducted to explore and describe the perceptions of 25 professionals employed at different tertiary hospitals in the various regions of Saudi. A thematic analysis was performed to search for and identify the most significant perceptions shared by the participants. Four themes were generated based on the ethical challenges of four areas related to stem cell use, including (1) forbidden and permitted sources of stem cells, (2) informed consent, (3) beneficence, and (4) ethical regulations and guidelines. Conclusion The study identified that there is a growing need to advance the knowledge, education, and awareness related to stem cell research and treatment in Saudi Arabia.
  • Ethical issues and practical barriers in internet-based suicide prevention research: a review and investigator survey

    Eleanor Bailey; Charlotte Mühlmann; Simon Rice; Maja Nedeljkovic; Mario Alvarez-Jimenez; Lasse Sander; Alison L. Calear; Philip J. Batterham; Jo Robinson (BMC, 2020-05-01)
    Abstract Background People who are at elevated risk of suicide stand to benefit from internet-based interventions; however, research in this area is likely impacted by a range of ethical and practical challenges. The aim of this study was to examine the ethical issues and practical barriers associated with clinical studies of internet-based interventions for suicide prevention. Method This was a mixed-methods study involving two phases. First, a systematic search was conducted to identify studies evaluating internet-based interventions for people at risk of suicide, and information pertaining to safety protocols and exclusion criteria was extracted. Second, investigators on the included studies were invited to complete an online survey comprising open-ended and forced-choice responses. Quantitative and qualitative methods were used to analyse the data. Results The literature search identified 18 eligible studies, of which three excluded participants based on severity of suicide risk. Half of the 15 suicide researchers who participated in the survey had experienced problems obtaining ethics approval, and none had encountered adverse events attributed to their intervention. Survey respondents noted the difficulty of managing risk in online environments and the limitations associated with implementing safety protocols, although some also reported increased confidence resulting from the ethical review process. Respondents recommended researchers pursue a collaborative relationship with their research ethics committees. Conclusion There is a balance to be achieved between the need to minimise the risk of adverse events whilst also ensuring interventions are being validated on populations who may be most likely to use and benefit from them (i.e., those who prefer anonymity). Further research is required to obtain the views of research ethics committees and research participants on these issues. Dialogue between researchers and ethics committees is necessary to address the need to ensure safety while also advancing the timely development of effective interventions in this critical area.
  • Too much safety? Safeguards and equal access in the context of voluntary assisted dying legislation

    Rosalind McDougall; Bridget Pratt (BMC, 2020-05-01)
    Abstract Background In June 2019, the Australian state of Victoria joined the growing number of jurisdictions around the world to have legalised some form of voluntary assisted dying. A discourse of safety was prominent during the implementation of the Victorian legislation. Main text In this paper, we analyse the ethical relationship between legislative “safeguards” and equal access. Drawing primarily on Ruger’s model of equal access to health care services, we analyse the Victorian approach to voluntary assisted dying in terms of four dimensions: horizontal equity, patient agency, high quality care, and supportive social norms. We argue that some provisions framed as safeguards in the legislation create significant barriers to equal access for eligible patients. Conclusions While safety is undoubtedly ethically important, we caution against an overemphasis on safeguarding in voluntary assisted dying legislation given the implications for equal access.
  • How general practitioners decide on maxims of action in response to demands from conflicting sets of norms: a grounded theory study

    Linus Johnsson; Lena Nordgren (BMC, 2019-05-01)
    Abstract Background The work of general practitioners (GPs) is infused by norms from several movements, of which evidence based medicine, patient-centredness, and virtue ethics are some of the most influential. Their precepts are not clearly reconcilable, and structural factors may limit their application. In this paper, we develop a conceptual framework that explains how GPs respond, across different fields of interaction in their daily work, to the pressure exerted by divergent norms. Methods Data was generated from unstructured interviews with and observations of sixteen Swedish GPs (who have by definition more than five years of experience after license to practice) and family medicine residents (with less than five years of experience) between 2015 and 2017. Straussian Grounded Theory was used for analysis. Results We found that GPs’ maxims of action can be characterised in terms of dichotomous responses to demands from four distinct sets of norms, or “voices”: the situation, the self, the system, and the profession. From the interactions between these voices emerge sixteen clusters of maxims of action. Based on the common features of the maxims in each cluster, we have developed a conceptual framework that appears to be rich enough to capture the meaning of the ethical decisions that GPs make in their daily work, yet has a high enough level of abstraction to be helpful when discussing the factors that influence those decisions. Conclusions Our four-dimensional model of GPs’ responses to norms is a first step toward a middle-range theory of quality from GPs’ perspective. It brings out the complexity of their practice, reveals tensions that easily remain invisible in more concrete accounts of their actions, and aids the transferability of substantive theories on GPs’ ethical decision making. By explaining the nature of the ethical conflicts that they experience, we provide some clues as to why efforts to improve quality by imposing additional norms on GPs may meet with varying degrees of success.
  • Prioritising access to pandemic influenza vaccine: a review of the ethics literature

    Jane H. Williams; Angus Dawson (BMC, 2020-05-01)
    Abstract Background The world is threatened by future pandemics. Vaccines can play a key role in preventing harm, but there will inevitably be shortages because there is no possibility of advance stockpiling. We therefore need some method of prioritising access. Main text This paper reports a critical interpretative review of the published literature that discusses ethical arguments used to justify how we could prioritise vaccine during an influenza pandemic. We found that the focus of the literature was often on proposing different groups as priorities (e.g. those with pre-existing health conditions, the young, the old, health care workers etc.). Different reasons were often suggested as a means of justifying such priority groupings (e.g. appeal to best overall outcomes, fairness, belonging to a vulnerable or ‘at risk’ group etc.). We suggest that much of the literature, wrongly, assumes that we are able to plan priority groups prior to the time of a particular pandemic and development of a particular vaccine. We also point out the surprising absence of various issues from the literature (e.g. how vaccines fit within overall pandemic planning, a lack of specificity about place, issues of global justice etc.). Conclusions The literature proposes a wide range of ways to prioritise vaccines, focusing on different groups and ‘principles’. Any plan to use pandemic vaccine must provide justifications for its prioritisation. The focus of this review was influenza pandemic vaccines, but lessons can be learnt for future allocations of coronavirus vaccine, if one becomes available.
  • Medical and midwifery students’ views on the use of conscientious objection in abortion care, following legal reform in Chile: a cross-sectional study

    M. Antonia Biggs; Lidia Casas; Alejandra Ramm; C. Finley Baba; Sara P. Correa (BMC, 2020-05-01)
    Abstract Background In August 2017, Chile lifted its complete ban on abortion by permitting abortion in three limited circumstances: 1) to save a woman’s life, 2) lethal fetal anomaly, and 3) rape. The new law allows regulated use of conscientious objection (CO) in abortion care, including allowing institutions to register as objectors. This study assesses medical and midwifery students’ support for CO, following legal reform. Methods From October 2017 to May 2018, we surveyed medical and midwifery students from seven universities located in Santiago, Chile. Universities included 4 secular (2 public and 2 private) and 3 private religiously-affiliated universities; all offering medical degrees with a specialization in obstetrics and gynecology (ob-gyn) and five offering midwifery degrees. We used generalized estimating equations (GEE) to identify characteristics associated with student support for CO, intentions to use CO to refuse to care for someone seeking abortion, and support for CO at the institutional level. Results 333 of the 413 eligible students who opened the survey, completed the questions on conscientious objection; 26% were seeking medical degrees with an ob-gyn specialty, 25% were seeking midwifery degrees, and 49% were seeking medical degrees and had not yet decided their specialty. While nearly all endorse requirements for conscientious objecting clinicians to inform (92%) and refer (91%) abortion-seeking patients, a minority (18%) would personally use conscientious objection to avoid caring for a patient seeking abortion (12% secular and 39% religious university students). About half of religious-university students (52%) and one-fifth of secular-university (20%) students support objections at the institutional level. Conclusions Most students support the regulated use of CO which preserves patients’ access to abortion care. Religious-university student views on the use of conscientious objection in abortion care are discordant with those of their institutions which currently support institutional-level objections.
  • What passive euthanasia is

    Iain Brassington (BMC, 2020-05-01)
    Abstract Background Euthanasia can be thought of as being either active or passive; but the precise definition of “passive euthanasia” is not always clear. Though all passive euthanasia involves the withholding of life-sustaining treatment, there would appear to be some disagreement about whether all such withholding should be seen as passive euthanasia. Main text At the core of the disagreement is the question of the importance of an intention to bring about death: must one intend to bring about the death of the patient in order for withholding treatment to count as passive euthanasia, as some sources would indicate, or does withholding in which death is merely foreseen belong to that category? We may expect that this unclarity would be important in medical practice, in law, and in policy. The idea that withholding life-sustaining treatment is passive euthanasia is traced to James Rachels’s arguments, which lend themselves to the claim that passive euthanasia does not require intention to end life. Yet the argument here is that Rachels’s arguments are flawed, and we have good reasons to think that intention is important in understanding the moral nature of actions. As such, we should reject any understanding of passive euthanasia that does not pay attention to intent. Short conclusion James Rachels’s work on active and passive euthanasia has been immensely influential; but this is an influence that we ought to resist.
  • How should assent to research be sought in low income settings? Perspectives from parents and children in Southern Malawi

    Helen Mangochi; Kate Gooding; Aisleen Bennett; Michael Parker; Nicola Desmond; Susan Bull (BMC, 2019-05-01)
    Abstract Background Paediatric research in low-income countries is essential to tackle high childhood mortality. As with all research, consent is an essential part of ethical practice for paediatric studies. Ethics guidelines recommend that parents or another proxy provide legal consent for children to participate, but that children should be involved in the decision through providing assent. However, there remain uncertainties about how to judge when children are ready to give assent and about appropriate assent processes. Malawi does not yet have detailed guidelines on assent. Understanding perspectives among children and their parents can assist in developing contextually-appropriate assent guidance. Methods Qualitative research was conducted with children and parents in three settings in Southern Malawi (low- and high-income urban and rural), to take account of any variations between socioeconomic and cultural contexts. In each setting, interviews were conducted with parents and their children who had participated in paediatric research to understand their experiences of assent and views on appropriate assent practice. Focus groups were also conducted with children and parents, to understand broader social perspectives. Results We found widespread support for involving children in decisions on research participation. Participants identified a range of factors that affect children’s capacity to give assent, including intellectual capacity, emotional development, life experience and cultural norms. Age was often mentioned as a consideration, but deemed an unreliable sole indicator of capacity to assent. In relation to appropriate assent processes, participants emphasised considerations such as supporting effective understanding and minimizing harms. Views on how to achieve these aims varied; for example, there were different ideas about the appropriate order in which to approach children and parents, and about whose decision to respect in the event of disagreement. Conclusions Parents and children agreed about the value of involving children in decisions on research, and about the need to promote children’s decision-making capacity while respecting parents’ interests in children’s welfare. Developing practical guidance that meets these principles is challenging, particularly given the need for flexible approaches that suit different study types, children’s capacities and family environments. Further discussion within the Malawi research and ethics community will help develop contextually-appropriate guidelines.
  • Addressing ethical challenges of disclosure in dementia prediction: limitations of current guidelines and suggestions to proceed

    Zümrüt Alpinar-Sencan; Silke Schicktanz (BMC, 2020-05-01)
    Abstract Background Biomarker research is gaining increasing attention focusing on the preclinical stages of the disease. Such interest requires special attention for communication and disclosure in clinical contexts. Many countries give dementia a high health policy priority by developing national strategies and by improving guidelines addressing disclosure of a diagnosis; however, risk communication is often neglected. Main text This paper aims to identify the challenges of disclosure in the context of dementia prediction and to find out whether existing clinical guidelines sufficiently address the issues of disclosing a dementia diagnosis and of disclosing the risk of developing dementia in asymptomatic and MCI stage. We will examine clinical guidelines and recommendations of three countries (USA, Canada and Germany) regarding predictive testing and diagnostic disclosure in dementia and Mild Cognitive Impairment (MCI) to show their potentials and limits. This will provide a background to address ethical implications of predictive information and to identify ways how to proceed further. We will start by examining the guidelines and recommendations by focusing on what there is already and what is missing regarding the challenges of disclosing dementia prediction and MCI. Then, we will highlight the novel ethical issues generated by the shift to identify preclinical stages of the disease by biomarkers. We will argue for the need to develop guidelines for disclosing a risk status, which requires different considerations then disclosing a diagnosis of dementia. Finally, we will make some suggestions on how to address the gap and challenges raised by referring to German Stakeholder Conference, which presents us a good starting point to the applicability of involving stakeholders. Conclusions This paper underlines the need to develop empirically based guidelines that address the ethical and social strategies for risk communication of dementia prediction by genetic as well as non-genetic biomarkers. According to our analysis, the guidelines do not address the new developments sufficiently. International efforts should aim for specific guidelines on counseling, communicating risk and disclosing results. We argue that guidelines on (risk) disclosure should be developed by involving various stakeholders and should be informed by socio-empirical studies involving laypersons’ needs and wishes regarding risk communication.

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