Perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research.

BACKGROUND: Genetic research can yield information that is unrelated to the study's objectives but may be of clinical or personal interest to study participants. There is an emerging but controversial responsibility to return some genetic research results, however there is little evidence available about the views of genomic researchers and others on the African continent. METHODS: We conducted a continental survey to solicit perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research. RESULTS: A total of 110 persons participated in the survey with 51 complete and 59 incomplete surveys received. Data was summarised using descriptive analysis. Overall, our respondents believed that individual genetic research results that are clinically actionable should be returned to study participants apparently because participants have a right to know things about their health, and it might also be a means for research participation to be recognized. Nonetheless, there is a need for development of precise guidance on how to return individual genetic research findings in African genomics research. DISCUSSION: Participants should receive information that could promote a healthier lifestyle; only clinically actionable findings should be returned, and participants should receive all important information that is directly relevant to their health. Nevertheless, detailed guidelines should inform what ought to be returned. H3Africa guidelines stipulate that it is generally considered good practice for researchers to feedback general study results, but there is no consensus about whether individual genomic study results should also be fed back. The decision on what individual results to feedback, if any, is very challenging and the specific context is important to make an appropriate determination.

Guiding Ethical Principles in Engineering Biology Research.

Engineering biology is being applied toward solving or mitigating some of the greatest challenges facing society. As with many other rapidly advancing technologies, the development of these powerful tools must be considered in the context of ethical uses for personal, societal, and/or environmental advancement. Researchers have a responsibility to consider the diverse outcomes that may result from the knowledge and innovation they contribute to the field. Together, we developed a Statement of Ethics in Engineering Biology Research to guide researchers as they incorporate the consideration of long-term ethical implications of their work into every phase of the research lifecycle. Herein, we present and contextualize this Statement of Ethics and its six guiding principles. Our goal is to facilitate ongoing reflection and collaboration among technical researchers, social scientists, policy makers, and other stakeholders to support best outcomes in engineering biology innovation and development.

What is the moral collapse in the Cochrane Collaboration about?

On September 13, 2018, one of the founders of the Cochrane Collaboration was expelled from the organisation, by a narrow vote of 6 to 5. Many see this as a moral collapse in what was once a magnificent grassroots organisation, guided by ethical principles and helping people make better decisions about healthcare interventions. I am that excommunicated person. I review here the essential issues leading to my expulsion, which occurred primarily because, in my capacity as a board member, I had challenged the CEO's virtually total control over the board, his mismanagement of Cochrane, and the direction in which he was taking the organisation. My criticism of psychiatric drugs and the highly prestigious Cochrane review of HPV vaccines also played a role. Freedom of Information requests revealed that the CEO went well beyond his brief to demand my removal from the Nordic Cochrane Centre, resulting in my sacking. Cochrane has become too close to industry and has introduced scientific censorship, which is detrimental for a scientific organisation. The board has announced a "zero tolerance" policy for repeated, serious bad behaviour. It would be beneficial if its CEO and board members applied this principle to themselves. I also discuss a recent paper by Trisha Greenhalgh et al that purported to have analysed the current Cochrane crisis in a disinterested fashion, which it did not. Instead of discussing the undeniable facts and the horrific abuses of power, TG consistently used positive terms about Cochrane and negative ones about me and my supporters.

The efficiency-equity trade-off, self-interest, and moral principles in health and safety valuation.

Policy makers try to take account of public preferences when making trade-offs between policy options. Yet most estimates of the value of health and safety reflect only individuals' self-interested preferences, neglecting their preferences over the distribution of public resources. We conduct an experiment in which participants choose between policy options that differ in their efficiency (expected number of fatalities or cases of ill health they would prevent) and their equity (defined in terms of the balance of risk reductions for different sections of the population). The policy options were framed as interventions to improve a hypothetical city's water supply that would reduce the risk of death or ill health for people in different areas of the city to varying degrees. In order to examine whether self-interest would affect the trade-offs, we asked half of the sample about scenarios where they would personally benefit from some options. Our results suggest that efficiency is the most important single factor determining preferences between policy options, but decisions were influenced almost as much by equity as by efficiency. The effect of self-interest was smaller than that of the general concern for efficiency. We also elicited participants' stated moral principles regarding trade-offs between equity, efficiency and self-interest, and found that their expressed principles were well-aligned with their choices. Our findings contribute to the growing evidence that distributional concerns matter when evaluating health interventions.

How Should Health Professionals and Policy Makers Respond to Substandard Care of Detained Immigrants?

More people, including children and pregnant women, are being detained for longer periods in a patchwork of over 200 detention centers around the country, most of which are private facilities or county jails. Human Rights Watch has documented systemic medical care failures at these facilities, including incompetent treatment, which is linked to patient deaths. Clinicians working in these facilities face formidable obstacles to providing adequate care, two of which are the Department of Homeland Security's lack of reasonable alternatives to detention and insufficient staffing. Harm caused by these conditions and detention itself should be enough to prompt clinicians to insist that the government enable provision of care consistent with generally accepted standards, including through reducing the detained population.

Demographic Variables of Corruption in the Chinese Construction Industry: Association Rule Analysis of Conviction Records.

Corruption in the construction industry is a serious problem in China. As such, fighting this corruption has become a priority target of the Chinese government, with the main effort being to discover and prosecute its perpetrators. This study profiles the demographic characteristics of major incidences of corruption in construction. It draws on the database of the 83 complete recorded cases of construction related corruption held by the Chinese National Bureau of Corruption Prevention. Categorical variables were drawn from the database, and 'association rule mining analysis' was used to identify associations between variables as a means of profiling perpetrators. Such profiling may be used as predictors of future incidences of corruption, and consequently to inform policy makers in their fight against corruption. The results signal corruption within the Chinese construction industry to be correlated with age, with incidences rising as managers' approach retirement age. Moreover, a majority of perpetrators operate within government agencies, are department deputies in direct contact with projects, and extort the greatest amounts per case from second tier cities. The relatively lengthy average 6.4-year period before cases come to public attention corroborates the view that current efforts at fighting corruption remain inadequate.

The status of ethics in Swedish health care management: a qualitative study.

BACKGROUND: By tradition, the Swedish health care system is based on a representative and parliamentary form of government. Recently, new management forms, inspired by market principles, have developed. The steering system is both national and regional, in that self-governing county councils are responsible for the financing and provision of health care in different regions. National and local documents regulating Swedish health care mention several ethical values, such as equity in health for the whole population and respect for autonomy and human dignity. It is therefore of interest to investigate the status of such ethical statements in Swedish health care management. METHOD: The aim of the present study was to investigate perceptions of the status of ethics in the daily work of politicians, chief civil servants and Chief Executive Officers (CEOs) from care-giver organizations in the county council of Stockholm. A qualitative method was used, based on inductive content analysis of individual interviews with 13 health care managers. RESULTS: The content analysis resulted in four categories: Low status of ethics; Cost-effectiveness over ethics; Separation of ethics from management; and Lack of opportunities for ethical competence building. The informants described how they prioritized economic concerns over ethics and separated ethics from their daily work. They also expressed that they experienced that this development had been enforced by the marketization of the health care system. Further, they described how they lacked opportunities for ethical discussions, which could have helped develop their ethical competence. CONCLUSIONS: In order to improve the status of ethics in health care management, ethical considerations and analyses must be integrated in the regular work tasks of politicians, chief civil servants and CEOs; such as decision-making, budgeting and reform work. Further, opportunities for ethical dialogues on a regular basis should be organized, in order to improve ethical competence on the management level. New steering forms, less focused upon market principles, might also be needed, in order to improve the status of ethics in the health care management organization.

How do policymakers interpret and implement the principle of equivalence with regard to prison health? A qualitative study among key policymakers in England.

BACKGROUND: The principle of equivalence in prison health has been established for nearly four decades. It seeks to ensure that prisoners have access to the same level of healthcare as members of society at large, which is entrenched within the international legal framework and England's national health policies. AIMS: This study examined how key policymakers interpret and implement the principle of equivalence in English prisons. It also identified opportunities and threats associated with the application of the principle. METHODS: In total, 30 policymakers took part in this research. These participants engaged in policymaking activities and occupied positions of authority in the prison field. RESULTS: Despite the policymakers' consensus on the importance of the equivalence principle, there was a varying degree of understanding regarding what constitutes 'equivalence'. Participants described how the security culture impedes prisoners' access to healthcare services. Additionally, the increasing size and complexity of the prison population, coupled with a diminishing level of resources, reduce the level of care being provided in prisons and thus compromise implementation of equivalence in English prisons. CONCLUSIONS: Inconsistent interpretation of equivalence, the prevailing security drive, increasing numbers and health complexities of prisoners and fiscal austerity threaten the implementation of equivalence in English prisons. This research calls for new guidance on how to interpret and implement equivalence, along with measures to educate prison governors and staff on the prison rehabilitation value, ensure greater investment in prison health and consider alternatives to imprisonment to future-proof the principle of equivalence in the English prison system.

Patient data and patient rights: Swiss healthcare stakeholders' ethical awareness regarding large patient data sets - a qualitative study.

BACKGROUND: There is a growing interest in aggregating more biomedical and patient data into large health data sets for research and public benefits. However, collecting and processing patient data raises new ethical issues regarding patient's rights, social justice and trust in public institutions. The aim of this empirical study is to gain an in-depth understanding of the awareness of possible ethical risks and corresponding obligations among those who are involved in projects using patient data, i.e. healthcare professionals, regulators and policy makers. METHODS: We used a qualitative design to examine Swiss healthcare stakeholders' experiences and perceptions of ethical challenges with regard to patient data in real-life settings where clinical registries are sponsored, created and/or used. A semi-structured interview was carried out with 22 participants (11 physicians, 7 policy-makers, 4 ethical committee members) between July 2014 and January 2015. The interviews were audio-recorded, transcribed, coded and analysed using a thematic method derived from Grounded Theory. RESULTS: All interviewees were concerned as a matter of priority with the needs of legal and operating norms for the collection and use of data, whereas less interest was shown in issues regarding patient agency, the need for reciprocity, and shared governance in the management and use of clinical registries' patient data. This observed asymmetry highlights a possible tension between public and research interests on the one hand, and the recognition of patients' rights and citizens' involvement on the other. CONCLUSIONS: The advocation of further health-related data sharing on the grounds of research and public interest, without due regard for the perspective of patients and donors, could run the risk of fostering distrust towards healthcare data collections. Ultimately, this could diminish the expected social benefits. However, rather than setting patient rights against public interest, new ethical approaches could strengthen both concurrently. On a normative level, this study thus provides material from which to develop further ethical reflection towards a more cooperative approach involving patients and citizens in the governance of their health-related big data.

Ethical issues in health philanthropy.

Health leaders in Canada face a myriad of challenges with healthcare philanthropy-not just the practical question of how to be successful but also ethical questions. Is fundraising in partnership with companies that are implicated in the so-called lifestyle diseases appropriate? When does appropriate recognition for donors or volunteers cross the line into facilitating preferential access to care? Ethical decision-making in health philanthropy considers appropriate recognition or partnership in donor relations in the context of the public good with which healthcare institutions are entrusted and the fiduciary responsibilities of hospitals and clinicians to patients.