http://www.biomedcentral.com/bmcmedethics/ The latest research articles published by BMC Medical Ethics 2012-01-05T00:00:00Z Background: Family members are often required to act as substitute decision-makers when health care or research participation decisions must be made for an incapacitated relative. Yet most families are unable to accurately predict older adult preferences regarding future health care and willingness to engage in research studies. Discussion and documentation of preferences could improve proxies' abilities to decide for their loved ones. This trial assesses the efficacy of an advance planning intervention in improving the accuracy of substitute decision-making and increasing the frequency of documented preferences for health care and research. It also investigates the financial impact on the healthcare system of improving substitute decision-making. Methods: Dyads (n=240) comprising an older adult and his/her self-selected proxy are randomly allocated to the experimental or control group, after stratification for type of designated proxy and self-report of prior documentation of healthcare preferences. At baseline, clinical and research vignettes are used to elicit older adult preferences and assess the ability of their proxy to predict those preferences. Responses are elicited under four health states, ranging from the subject's current health state to severe dementia. For each state, we estimated the public costs of the healthcare services that would typically be provided to a patient under these scenarios. Experimental dyads are visited at home, twice, by a specially trained facilitator who communicates the dyad-specific results of the concordance assessment, helps older adults convey their wishes to their proxies, and offers assistance in completing a guide entitled My Preferences that we designed specifically for that purpose. In between these meetings, experimental dyads attend a group information session about My Preferences. Control dyads attend three monthly workshops aimed at promoting healthy behaviors. Concordance assessments are repeated at the end of the intervention and 6 months later to assess improvement in predictive accuracy and cost savings, if any. Copies of completed guides are made at the time of these assessments.DiscussionThis study will determine whether the tested intervention guides proxies in making decisions that concur with those of older adults, motivates the latter to record their wishes in writing, and yields savings for the healthcare system.Trial Registration: ISRCTN89993391 http://www.biomedcentral.com/1472-6939/13/1 Gina Bravo Marcel Arcand Daniele Blanchette Anne-Marie Boire-Lavigne Marie-France Dubois Maryse Guay Paule Hottin Julie Lane Judith Lauzon Suzanne Bellemare BMC Medical Ethics 2012, null:1 2012-01-05T00:00:00Z doi:10.1186/1472-6939-13-1 /content/figures/1472-6939-13-1-toc.gif BMC Medical Ethics 1472-6939 ${item.volume} 1 2012-01-05T00:00:00Z PDF Background: In 2006, the Centers for Disease Control and Prevention (CDC) recommended three changes to HIV testing methods in US healthcare settings: (1) an opt-out approach, (2) removal of separate signed consent, and (3) optional HIV prevention counseling. These recommendations led to a public debate about their moral acceptability. Methods: We interviewed 25 members from the fields of US HIV advocacy, care, policy, and research about the ethical merits and demerits of the three changes to HIV testing methods. We performed a qualitative analysis of the participant responses in the interviews and summarized the major themes. Results: In general, arguments in favor of the methods were based upon their ultimate contribution to increasing HIV testing and permitting the consequent benefits of identifying those who are HIV infected and linking them to further care. Conclusions: The prevailing theme of ethical concern focused on suspicions that the methods might not be properly implemented, and that further safeguards might be needed. http://www.biomedcentral.com/1472-6939/12/24 Michael Waxman Roland Merchant M Celada Melissa Clark BMC Medical Ethics 2011, null:24 2011-12-16T00:00:00Z doi:10.1186/1472-6939-12-24 /content/figures/1472-6939-12-24-toc.gif BMC Medical Ethics 1472-6939 ${item.volume} 24 2011-12-16T00:00:00Z PDF Background: Nurse managers have the burden of experiencing frequent ethical issues related to both their managerial and nursing care duties, according to previous international studies. However, no such study was published in Malaysia. The purpose of this study was to explore nurse managers' experience with ethical issues in six government hospitals in Malaysia including learning about the way they dealt with the issues. Methods: A cross-sectional study was conducted in August-September, 2010 involving 417 (69.2%) of total 603 nurse managers in the six Malaysian government hospitals. Data were collected using three-part self-administered questionnaire. Part I was regarding participants' demographics. Part II was about the frequency and areas of management where ethical issues were experienced, and scoring of the importance of 11 pre-identified ethical issues. Part III asked how they dealt with ethical issues in general; ways to deal with the 11 pre-identified ethical issues, and perceived stress level. Data were analyzed using descriptive statistics, cross-tabulations and Pearson's Chi-square. Results: A total of 397 (95.2%) participants experienced ethical issues and 47.2% experienced them on weekly to daily basis. Experiencing ethical issues were not associated with areas of practice. Top area of management where ethical issues were encountered was "staff management", but "patient care" related ethical issues were rated as most important. Majority would "discuss with other nurses" in dealing generally with the issues. For pre-identified ethical issues regarding "patient care", "discuss with doctors" was preferred. Only 18.1% referred issues to "ethics committees" and 53.0% to the code of ethics. Conclusions: Nurse managers, regardless of their areas of practice, frequently experienced ethical issues. For dealing with these, team-approach needs to be emphasized. Proper understanding of the code of ethics is needed to provide basis for reasoning. http://www.biomedcentral.com/1472-6939/12/23 Maizura binti Musa Md. Harun-Or-Rashid Junichi Sakamoto BMC Medical Ethics 2011, null:23 2011-11-16T00:00:00Z doi:10.1186/1472-6939-12-23 /content/figures/1472-6939-12-23-toc.gif BMC Medical Ethics 1472-6939 ${item.volume} 23 2011-11-16T00:00:00Z XML Background: Promoting the social value of global health research undertaken in resource poor settings has become a key concern in global research ethics. The consideration for benefit sharing, which concerns the elucidation of what if anything, is owed to participants, their communities and host nations that take part in such research, and the obligations of researchers involved, is one of the main strategies used for promoting social value of research. In the last decade however, there has been intense debate within academic bioethics literature seeking to define the benefits, the beneficiaries, and the scope of obligations for providing these benefits. Although this debate may be indicative of willingness at the international level to engage with the responsibilities of researchers involved in global health research, it remains unclear which forms of benefits or beneficiaries should be considered. International and local research ethics guidelines are reviewed here to delineate the guidance they provide. Methods: We reviewed documents selected from the international compilation of research ethics guidelines by the Office for Human Research Protections under the US Department of Health and Human Services. Results: Access to interventions being researched, the provision of unavailable health care, capacity building for individuals and institutions, support to health care systems and access to medical and public health interventions proven effective, are the commonly recommended forms of benefits. The beneficiaries are volunteers, disease or illness affected communities and the population in general. Interestingly however, there is a divide between "global opinion" and the views of particular countries within resource poor settings as made explicit by differences in emphasis regarding the potential benefits and the beneficiaries. Conclusion: Although in theory benefit sharing is widely accepted as one of the means for promoting the social value of international collaborative health research, there is less agreement amongst major guidelines on the specific responsibilities of researchers over what is ethical in promoting the social value of research. Lack of consensus might have practical implications for efforts aimed at enhancing the social value of global health research undertaken in resource poor settings. Further developments in global research ethics require more reflection, paying attention to the practical realities of implementing the ethical principles in real world context. http://www.biomedcentral.com/1472-6939/12/22 Geoffrey Lairumbi Parker Michael Raymond Fitzpatrick Michael English BMC Medical Ethics 2011, null:22 2011-11-15T00:00:00Z doi:10.1186/1472-6939-12-22 /content/figures/1472-6939-12-22-toc.gif BMC Medical Ethics 1472-6939 ${item.volume} 22 2011-11-15T00:00:00Z XML Background: In the course of the last four decades, the profession of physiotherapy has progressively expanded its scope of responsibility and its focus on professional autonomy and evidence-based clinical practice. To preserve professional autonomy, it is crucial for the physiotherapy profession to meet society's expectations and demands of professional competence as well as ethical competence. Since it is becoming increasingly popular to choose a carrier in private practice in Denmark this context constitutes the frame of this study. Physiotherapy in private practice involves mainly a meeting between two partners: the physiotherapist and the patient. In the meeting, power asymmetry between the two partners is a condition that the physiotherapist has to handle. The aim of this study was to explore whether ethical issues rise during the first physiotherapy session discussed from the perspective of the physiotherapists in private practice. Methods: A qualitative approach was chosen and semi-structured interviews with 21 physiotherapists were carried out twice and analysed by using a phenomenological framework. Results: Four descriptive themes emerged: general reflections on ethics in physiotherapy; the importance of the first physiotherapy session; the influence of the clinical environment on the first session and; reflections and actions upon beneficence towards the patient within the first session. The results show that the first session and the clinical context in private practice are essential from an ethical perspective. Conclusions: Ethical issues do occur within the first session, the consciousness about ethical issues differs in Danish physiotherapy private practice, and reflections and acts are to a lesser extent based on awareness of ethical theories, principles and ethical guidelines. Beneficence towards the patient is a fundamental aspect of the physiotherapists' understanding of the first session. However, if the physiotherapist lacks a deeper ethical awareness, the physiotherapist may reason and/or act ethically to a varying extent: only an ethically conscious physiotherapist will know when he or she reflects and acts ethically. Further exploration of ethical issues in private practice is recommendable, and as management policy is deeply embedded within the Danish public sector there are reasons to explore public contexts of physiotherapy as well. http://www.biomedcentral.com/1472-6939/12/21 Jeanette Praestegaard Gunvor Gard BMC Medical Ethics 2011, null:21 2011-10-12T00:00:00Z doi:10.1186/1472-6939-12-21 /content/figures/1472-6939-12-21-toc.gif BMC Medical Ethics 1472-6939 ${item.volume} 21 2011-10-12T00:00:00Z XML Background: The concept of benefit sharing to enhance the social value of global health research in resource poor settings is now a key strategy for addressing moral issues of relevance to individuals, communities and host countries in resource poor settings when they participate in international collaborative health research.The influence of benefit sharing framework on the conduct of collaborative health research is for instance evidenced by the number of publications and research ethics guidelines that require prior engagement between stakeholders to determine the social value of research to the host communities. While such efforts as the production of international guidance on how to promote the social value of research through such strategies as benefit sharing have been made, the extent to which these ideas and guidelines have been absorbed by those engaged in global health research especially in resource poor settings remains unclear. We examine this awareness among stakeholders involved in health related research in Kenya. Methods: We conducted in-depth interviews with key informants drawn from within the broader health research system in Kenya including researchers from the mainstream health research institutions, networks and universities, teaching hospitals, policy makers, institutional review boards, civil society organisations and community representative groups. Results: Our study suggests that although people have a sense of justice and the moral aspects of research, this was not articulated in terms used in the literature and the guidelines on the ethics of global health research. Conclusion: This study demonstrates that while in theory several efforts can be made to address the moral issues of concern to research participants and their communities in resource poor settings, quick fixes such as benefit sharing are not going to be straightforward. We suggest a need to pay closer attention to the processes through which ethical principles are enacted in practice and distil lessons on how best to involve individuals and communities in promoting ethical conduct of global health research in resource poor settings. http://www.biomedcentral.com/1472-6939/12/20 Geoffrey Lairumbi Michael Parker Raymond Fitzpatrick English Mike BMC Medical Ethics 2011, null:20 2011-10-03T00:00:00Z doi:10.1186/1472-6939-12-20 /content/figures/1472-6939-12-20-toc.gif BMC Medical Ethics 1472-6939 ${item.volume} 20 2011-10-03T00:00:00Z XML Background: Although attention to healthcare ethics in rural areas has increased, specific focus on rural palliative care is still largely under-studied and under-theorized. The purpose of this study was to gain a deeper understanding of the values informing good palliative care from rural individuals' perspectives. Methods: We conducted a qualitative ethnographic study in four rural communities in Western Canada. Each community had a population of 10, 000 or less and was located at least a three hour travelling distance by car from a specialist palliative care treatment centre. Data were collected over a 2-year period and included 95 interviews, 51 days of field work and 74 hours of direct participant observation where the researchers accompanied rural healthcare providers. Data were analyzed inductively to identify the most prevalent thematic values, and then coded using NVivo. Results: This study illuminated the core values of knowing and being known, being present and available, and community and mutuality that provide the foundation for ethically good rural palliative care. These values were congruent across the study communities and across the stakeholders involved in rural palliative care. Although these were highly prized values, each came with a corresponding ethical tension. Being known often resulted in a loss of privacy. Being available and present created a high degree of expectation and potential caregiver strain. The values of community and mutuality created entitlement issues, presenting daunting challenges for coordinated change. Conclusions: The values identified in this study offer the opportunity to better understand common ethical tensions that arise in rural healthcare and key differences between rural and urban palliative care. In particular, these values shed light on problematic health system and health policy changes. When initiatives violate deeply held values and hard won rural capacity to address the needs of their dying members is undermined, there are long lasting negative consequences. The social fabric of rural life is frayed. These findings offer one way to re-conceptualize healthcare decision making through consideration of critical values to support ethically good palliative care in rural settings. http://www.biomedcentral.com/1472-6939/12/19 Barbara Pesut Joan Bottorff Carole Robinson BMC Medical Ethics 2011, null:19 2011-09-28T00:00:00Z doi:10.1186/1472-6939-12-19 /content/figures/1472-6939-12-19-toc.gif BMC Medical Ethics 1472-6939 ${item.volume} 19 2011-09-28T00:00:00Z XML Background: Pediatric oncology has a strong research culture. Most pediatric oncologists are investigators, involved in clinical care as well as research. As a result, a remarkable proportion of children with cancer enrolls in a trial during treatment. This paper discusses the ethical consequences of the unprecedented integration of research and care in pediatric oncology from the perspective of parents and physicians.MethodologyAn empirical ethical approach, combining (1) a narrative review of (primarily) qualitative studies on parents' and physicians' experiences of the pediatric oncology research practice, and (2) comparison of these experiences with existing theoretical ethical concepts about (pediatric) research. The use of empirical evidence enriches these concepts by taking into account the peculiarities that ethical challenges pose in practice. Results: Analysis of the 22 studies reviewed revealed that the integration of research and care has consequences for the informed consent process, the promotion of the child's best interests, and the role of the physician (doctor vs. scientist). True consent to research is difficult to achieve due to the complexity of research protocols, emotional stress and parents' dependency on their child's physician. Parents' role is to promote their child's best interests, also when they are asked to consider enrolling their child in a trial. Parents are almost never in equipoise on trial participation, which leaves them with the agonizing situation of wanting to do what is best for their child, while being fearful of making the wrong decision. Furthermore, a therapeutic misconception endangers correct assessment of participation, making parents inaccurately attribute therapeutic intent to research procedures. Physicians prefer the perspective of a therapist over a researcher. Consequently they may truly believe that in the research setting they promote the child's best interests, which maintains the existence of a therapeutic misconception between them and parents. Conclusion: Due to the integration of research and care, their different ethical perspectives become intertwined in the daily practice of pediatric oncology. Increasing awareness of what this means for the communication between parents and physicians is essential. Future research should focus on efforts that overcome the problems that the synchronicity of research and care evokes. http://www.biomedcentral.com/1472-6939/12/18 Martine de Vries Mirjam Houtlosser Jan Wit Dirk Engberts Dorine Bresters Gertjan Kaspers Evert van Leeuwen BMC Medical Ethics 2011, null:18 2011-09-27T00:00:00Z doi:10.1186/1472-6939-12-18 /content/figures/1472-6939-12-18-toc.gif BMC Medical Ethics 1472-6939 ${item.volume} 18 2011-09-27T00:00:00Z XML Background: Medical tourism, thought of as patients seeking non-emergency medical care outside of their home countries, is a growing industry worldwide. Canadians are amongst those engaging in medical tourism, and many are helped in the process of accessing care abroad by medical tourism brokers - agents who specialize in making international medical care arrangements for patients. As a key source of information for these patients, brokers are likely to play an important role in communicating the risks and benefits of undergoing surgery or other procedures abroad to their clientele. This raises important ethical concerns regarding processes such as informed consent and the liability of brokers in the event that complications arise from procedures. The purpose of this article is to examine the language, information, and online marketing of Canadian medical tourism brokers' websites in light of such ethical concerns. Methods: An exhaustive online search using multiple search engines and keywords was performed to compile a comprehensive directory of English-language Canadian medical tourism brokerage websites. These websites were examined using thematic content analysis, which included identifying informational themes, generating frequency counts of these themes, and comparing trends in these counts to the established literature. Results: Seventeen websites were identified for inclusion in this study. It was found that Canadian medical tourism broker websites varied widely in scope, content, professionalism and depth of information. Three themes emerged from the thematic content analysis: training and accreditation, risk communication, and business dimensions. Third party accreditation bodies of debatable regulatory value were regularly mentioned on the reviewed websites, and discussion of surgical risk was absent on 47% of the websites reviewed, with limited discussion of risk on the remaining ones. Terminology describing brokers' roles was somewhat inconsistent across the websites. Finally, brokers' roles in follow up care, their prices, and the speed of surgery were the most commonly included business dimensions on the reviewed websites. Conclusion: Canadian medical tourism brokers currently lack a common standard of care and accreditation, and are widely lacking in providing adequate risk communication for potential medical tourists. This has implications for the informed consent and consequent safety of Canadian medical tourists. http://www.biomedcentral.com/1472-6939/12/17 Kali Penney Jeremy Snyder Valorie Crooks Rory Johnston BMC Medical Ethics 2011, null:17 2011-09-26T00:00:00Z doi:10.1186/1472-6939-12-17 /content/figures/1472-6939-12-17-toc.gif BMC Medical Ethics 1472-6939 ${item.volume} 17 2011-09-26T00:00:00Z XML Background: Recent changes to regulatory guidance in the US and Europe have complicated oversight of secondary research by rendering most uses of de-identified data exempt from human subjects oversight. To identify the implications of such guidelines for harms to participants and communities, this paper explores the secondary uses of one de-identified DNA sample collection with limited oversight: the Human Genome Diversity Project (HGDP)-Centre d'Etude du Polymorphisme Humain, Fondation Jean Dausset (CEPH) Human Genome Diversity Panel. Methods: Using a combination of keyword and cited reference search, we identified English-language scientific articles published between 2002 and 2009 that reported analysis of HGDP Diversity Panel samples and/or data. We then reviewed each article to identify the specific research use to which the samples and/or data was applied. Secondary uses were categorized according to the type and kind of research supported by the collection. Results: A wide variety of secondary uses were identified from 148 peer-reviewed articles. While the vast majority of these uses were consistent with the original intent of the collection, a minority of published reports described research whose primary findings could be regarded as controversial, objectionable, or potentially stigmatizing in their interpretation. Conclusions: We conclude that potential risks to participants and communities cannot be wholly eliminated by anonymization of individual data and suggest that explicit review of proposed secondary uses, by a Data Access Committee or similar internal oversight body with suitable stakeholder representation, should be a required component of the trustworthy governance of any repository of data or specimens. http://www.biomedcentral.com/1472-6939/12/16 Stephanie Fullerton Sandra Lee BMC Medical Ethics 2011, null:16 2011-09-26T00:00:00Z doi:10.1186/1472-6939-12-16 /content/figures/1472-6939-12-16-toc.gif BMC Medical Ethics 1472-6939 ${item.volume} 16 2011-09-26T00:00:00Z XML