Ethical, legal, and social issues (ELSI) in rare diseases: a landscape analysis from funders.

Recent interest in personalized medicine has highlighted the importance of research in ethical, legal, and social issues (ELSI). Issues in ELSI research may be magnified in the rare diseases population (i.e., small numbers of affected individuals, challenges in maintaining confidentiality, and paucity of treatments for diseases where natural history information may be limited). More than other areas of research, potential barriers include the lack of funding opportunities and appropriate review processes for applications to funding agencies. The ELSI Working Group of the International Rare Diseases Research Consortium (IRDiRC) performed an informal survey on ELSI funding initiatives to learn more about different funding mechanisms and to identify potential gaps in funding opportunities. The Working Group discusses these challenges and highlights the role of funding agencies and partners such as patient advocacy groups, specialists in social sciences and humanities, and clinicians to advance ELSI research in rare diseases.

Medical crowdfunding and the virtuous donor.

Patients and families are increasingly turning to crowdfunding to help them cover the cost of medical care. The ethics of crowdfunding has garnered some attention in the bioethical literature. In this paper I examine an ethical aspect of medical crowdfunding (MCF) that has received limited attention: the role of donors. I defend a virtue ethical approach to analyzing the role of donors in MCF. Vicious donation, where donors do not exercise the relevant virtues, can compound some of the ethical risks associated with MCF, as seen in the several recent, high-profile cases. My primary contention in this paper is that encouraging donors to think about how donating to a particular campaign would measure against the virtues I outline could help to discourage acts of ethically problematic donation to MCF campaigns.

Unethical Aspects of Open Access.

In this article, we identify and discuss several ethically problematic aspects of open access scientific publishing. We conclude that, despite some positive effects, paid open access has at least three unethical aspects: it discriminates against researchers, creates an editorial conflict of interest, and diverts funding from the actual conduct of research. To be truly open access, all researchers must be able to access its benefits.

Corporate Funding for Schools of Public Health: Confronting the Ethical and Economic Challenges.

We discuss the public and private sponsoring of university research and the issues it raises in a context of diminished federal funding. We consider research funding at schools of public health and why these schools have historically had weaker links to industry than have other academic units. We argue that the possibility of enhanced links with industry at schools of public health may raise specific concerns beyond those facing universities generally. Six issues should be considered before entering into these relationships: (1) the effects on research orientation, (2) unacceptability of some funders, (3) potential threats to objectivity and academic freedom, (4) effects on academic standards, (5) the effects on dissemination of knowledge, and (6) reputational risks.

Protecting Ideas: Ethical and Legal Considerations When a Grant's Principal Investigator Changes.

Ethical issues related the responsible conduct of research involve questions concerning the rights and obligations of investigators to propose, design, implement, and publish research. When a principal investigator (PI) transfers institutions during a grant cycle, financial and recognition issues need to be addressed to preserve all parties' obligations and best interests in a mutually beneficial way. Although grants often transfer with the PI, sometimes they do not. Maintaining a grant at an institution after the PI leaves does not negate the grantee institution's obligation to recognize the PI's original ideas, contributions, and potential rights to some forms of expression and compensation. Issues include maintaining a role for the PI in determining how to take credit for, share and publish results that involve his or her original ideas. Ascribing proper credit can become a thorny issue. This paper provides a framework for addressing situations and disagreements that may occur when a new PI continues the work after the original PI transfers. Included are suggestions for proactively developing institutional mechanisms that address such issues. Considerations include how to develop solutions that comply with the responsible conduct of research, equitably resolve claims regarding reporting of results, and avoid the possibility of plagiarism.

La reforma del baremo: un reto y un esfuerzo para las aseguradoras / Reform of the scale: a challenge and an effort to Insurers

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Infectious disease research investments follow colonial ties: questionable ethics.

BACKGROUND: International funding for global health research is not systematically documented. We have assessed the level of research funding awarded by UK funders of international research to low- and middle-income countries or research institutions in these countries. METHODS: We analysed 6165 studies; from these we selected 522 that matched our criteria and used them to evaluate research funding by pathogen, disease, research and development value chain, funding organisation and country. RESULTS: Investment in infectious disease research in the countries studied totalled £264 million. Distribution of research investments closely mirrored that of the UK's former colonial territories; the top five countries, and eight of the top 10, have historical links with the UK, being current or former members of the Commonwealth of Nations. HIV, malaria and neglected tropical diseases attracted the greatest investment (£219 million; 82.8%), with most studies focussing on operational and epidemiological research (£109 million; 41.3%). CONCLUSIONS: International financing of infectious disease research by UK funding organisations follows former colonial ties. Funding institutions should review their funding policies to ensure that they also assist low- and middle-income countries without colonial ties to address their disease burden. A global investment surveillance system is needed to map and monitor funding for international research and guide the allocation of scarce resources to reduce the global disease burden.