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Open research and data transparency are a bulwark against unethical activities, but can also introduce integrity risks. As with all public goods, freely available data can be exploited, and here we set out the case for the use of safeguarding practices.

The explosion in open-access publishing has fuelled the rise of questionable operators.

Limiting open-access information on rare and endangered species will help to protect them Biologists have long valued publishing detailed information on rare and endangered species. Until relatively recently, much of this information was accessible only through accessing specialized scientific journals in university libraries. However, much of these data have been transferred online with the advent of digital platforms and a rapid push to open-access publication. Information is increasingly also available online in public reports and wildlife atlases, and research published behind paywalls can often be found in the public domain. Increased data and information accessibility has many benefits, such as helping to improve repeatability in scientific studies and enhancing collaboration ( 1 , 2 ). However, such readily accessible information also creates major problems in the context of conserving endangered species.

A recent report urges progress but builds barriers to research participants' access Researchers conducting imaging, environmental health, and genetics studies have offered participants their research findings for years, publishing data on this experience and producing consensus guidelines ( 1 – 5 ). Research participants have articulated the value in the return of results and data ( 6 ). The National Academies recently issued a report at the request of the National Institutes of Health (NIH), the Centers for Medicare and Medicaid Services (CMS), and the Food and Drug Administration ( 7 ) that focuses on the return of results in studies with human biospecimens. It proclaims support for the interests of research participants, endorses the importance of offering participants their individual-specific results, and advocates assessing the value of results from the standpoint of participants. Unfortunately, in our view, the report's announced commitment to participant-centered progress is undercut by its actual recommendations. We believe the report creates major roadblocks to the return of data and results and would constrict participants' existing rights of access.

Fostering data sharing is a scientific and ethical imperative. Health gains can be achieved more comprehensively and quickly by combining large, information-rich datasets from across conventionally siloed disciplines and geographic areas. While collaboration for data sharing is increasingly embraced by policymakers and the international biomedical community, we lack a common ethical and legal framework to connect regulators, funders, consortia, and research projects so as to facilitate genomic and clinical data linkage, global science collaboration, and responsible research conduct. Governance tools can be used to responsibly steer the sharing of data for proper stewardship of research discovery, genomics research resources, and their clinical applications. In this article, we propose that an international code of conduct be designed to enable global genomic and clinical data sharing for biomedical research. To give this proposed code universal application and accountability, however, we propose to position it within a human rights framework. This proposition is not without precedent: international treaties have long recognized that everyone has a right to the benefits of scientific progress and its applications, and a right to the protection of the moral and material interests resulting from scientific productions. It is time to apply these twin rights to internationally collaborative genomic and clinical data sharing.

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.

•Identifying the international standards for research ethics and regulations concerning non-human primates (NHPs).•Introduction of an international animal welfare and use committee (IAWUC).•Implementation of standards for animal welfare and care in research facilitates global collaboration efforts.•International collaborations can improve the standards of animal welfare and care.•Transparency in scientific research with NHPs influences public opinion and aids in public engagement. 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.

Establish principles for rapid and responsible data sharing in epidemics, urge Nathan L. Yozwiak, Stephen F. Schaffner and Pardis C. Sabeti.

Reaction to the first draft, out for public consultation until June 15, has been polarised. Since the Declaration of Helsinki was originally published in 1964 by the World Medical Association (WMA), its primary purpose has been to set international ethical principles for research involving human participants. A research volunteer takes part in an AIDS vaccine trial, Bangkok, ThailandKaren Kasmauski/Science Faction/Corbis With regard to post-trial access, the draft now reads: \"In advance of a clinical trial, sponsors, researchers and host country governments should make provisions for post-trial access for all participants who still need an intervention identified as beneficial in the study.\" [...]in disadvantaged and vulnerable populations: \"Consideration should also be given to ensuring that the community receives a fair level of additional benefits.\"

The Journal of Medical Ethics previously published on the debate in the UK and the Netherlands concerning the legal age limits imposed on donor-conceived people for access to information about the identity of gamete and embryo donors. In that publication, three arguments were foregrounded against lowering these age limits as a general rule for all donor-conceived people. In this contribution, we engage with these arguments and argue why we think they are insufficient to maintain the age limits. In contrast, we argue for a more suited, contextual and relational ethical framework based on care ethics, which emphasises relational autonomy and its dynamic, contextual development. This framework, we argue, provides a comprehensive approach for the analysis we made of the question of age limits and was applied in research performed in the Netherlands, commissioned by the Dutch Minister of Health. The framework enabled us to weigh the multidisciplinary—legal, psychological, phenomenological and ethical—findings of our research.