BackgroundGenomic profiling of malignant tumours has assisted clinicians in providing targeted therapies for many serious cancer-related illnesses. Although the characterisation of somatic mutations is the primary aim of tumour profiling for treatment, germline mutations may also be detected given the heterogenous origin of mutations observed in tumours. Guidance documents address the return of germline findings that have health implications for patients and their genetic relations. However, the implications of discovering a potential but unconfirmed germline finding from tumour profiling are yet to be fully explored. Moreover, as tumour profiling is increasingly applied in oncology, robust ethical frameworks are required to encourage large-scale data sharing and data aggregation linking molecular data to clinical outcomes, to further understand the role of genetics in oncogenesis and to develop improved cancer therapies.ResultsThis paper reports on the results of empirical research that is broadly aimed at developing an ethical framework for obtaining informed consent to return results from tumour profiling tests and to share the biomolecular data sourced from tumour tissues of cancer patients. Specifically, qualitative data were gathered from 36 semi-structured interviews with cancer patients and oncology clinicians at a cancer treatment centre in Singapore. The interview data indicated that patients had a limited comprehension of cancer genetics and implications of tumour testing. Furthermore, oncology clinicians stated that they lacked the time to provide in depth explanations of the tumour profile tests. However, it was accepted from both patients and oncologist that the return potential germline variants and the sharing of de-identified tumour profiling data nationally and internationally should be discussed and provided as an option during the consent process.ConclusionsFindings provide support for the return of tumour profiling results provided that they are accompanied with an adequate explanation from qualified personnel. They also support the use of broad consent regiments within an ethical framework that promotes trust and benefit sharing with stakeholders and provides accountability and transparency in the storage and sharing of biomolecular data for research.Electronic supplementary materialThe online version of this article (10.1186/s40246-017-0127-1) contains supplementary material, which is available to authorized users.
BackgroundOne Health (OH) is an interdisciplinary collaborative approach to human and animal health that aims to break down conventional research and policy ‘silos’. OH has been used to develop strategies for zoonotic Emerging Infectious Diseases (EID). However, the ethical case for OH as an alternative to more traditional public health approaches is largely absent from the discourse. To study the ethics of OH, we examined perceptions of the human health and ecological priorities for the management of zoonotic EID in the Southeast Asia country of Singapore.MethodsWe conducted a mixed methods study using a modified Delphi technique with a panel of 32 opinion leaders and 11 semi-structured interviews with a sub-set of those experts in Singapore. Panellists rated concepts of OH and priorities for zoonotic EID preparedness planning using a series of scenarios developed through the study. Interview data were examined qualitatively using thematic analysis.FindingsWe found that panellists agreed that OH is a cross-disciplinary collaboration among the veterinary, medical, and ecological sciences, as well as relevant government agencies encompassing animal, human, and environmental health. Although human health was often framed as the most important priority in zoonotic EID planning, our qualitative analysis suggested that consideration of non-human animal health and welfare was also important for an effective and ethical response. The panellists also suggested that effective pandemic planning demands regional leadership and investment from wealthier countries to better enable international cooperation.ConclusionWe argue that EID planning under an OH approach would benefit greatly from an ethical ecological framework that accounts for justice in human, animal, and environmental health.
Background: In low-resource settings with few health workers, Fetal Heart Rate (FHR) monitoring in labour can be inconsistent and unreliable. An initiative to improve fetal monitoring was implemented in two public hospitals in rural Liberia; the country with the second lowest number of midwives and nurses in the world (1.007 per 10,000 of the population). The initiative assessed the feasibility of educating women in labour to monitor their own FHR and alert a midwife of changes detected. Methods: Four hundred seventy-four women admitted in labour without obstetric complications were approached. Four hundred sixty-one consented to participate (97%) and 13 declined. Those consenting were trained to monitor their FHR using a sonicaid for approximately 1 minute immediately following the end of every uterine contraction and to inform a midwife of changes. If changes were confirmed, standard clinical interventions for fetal distress (lateral tilt, intravenous fluids and oxygen) were undertaken and, when appropriate, accelerated delivery by vacuum or Caesarean section. Participants provided views on their experiences; subsequently categorized into themes. Neonatal outcomes regarding survival, need for resuscitation, presence of birth asphyxia, and treatment were recorded. Results: Four hundred sixty-one out of 474 women gave consent, of whom 431 of 461 (93%) completed the monitoring themselves. Three hundred eighty-seven of 400 women who gave comments, reported positive and 13 negative experiences. FHR changes were reported in 28 participants and confirmed in 26. Twenty-four of these 26 FHR changes were first identified by mothers. Fetal death was identified on admission during training in one mother. Thirteen neonates required resuscitation, with 12 admitted to the neonatal unit. One developed temporary seizures suggesting birth asphyxia. All 26 neonates were discharged home apparently well. In 2 mothers, previously unrecognized obstetric complications (cord prolapse and Bandl's ring with obstructed labour) accompanied FHR changes. Resuscitation was needed in 8 neonates without identified FHR changes including one of birth weight 1.3 Kg who could not be resuscitated. There were no intrapartum stillbirths in participants.
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