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"Financing, Organized - ethics"
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Ethical, legal, and social issues (ELSI) in rare diseases: a landscape analysis from funders
2020
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.
Journal Article
Who would you share your funding with?
2018
I want to see whether the wisdom of crowds does a better job than conventional grant review at supporting research, says Johan Bollen.
I want to see whether the wisdom of crowds does a better job than conventional grant review at supporting research, says Johan Bollen.
Journal Article
Topic choice works against black NIH applicants
2019
Study flags new factor contributing to racial disparity in who wins grants. A team of scientists has identified a key factor in understanding why black applicants are significantly less likely to receive funding from the U.S. National Institutes of Health (NIH) than their white counterparts. It's the topics that black scientists want to study. Specifically, black applicants are more likely to propose approaches, such as community interventions, and topics, such as health disparities, adolescent health, and fertility, that receive less competitive scores from reviewers. And a proposal with a poorer score is less likely to be funded. The finding is already prompting discussion about whether that disparity is rooted in NIH's priorities—and whether those priorities should be rethought. The study, published on 9 October in Science Advances , is based on a text analysis of some 157,000 proposals submitted between 2011 and 2015 for NIH's bread-and-butter R01 grants.
Journal Article
Research on embryo-like structures struggles to win US government funding
2020
Biologists say they need clearer guidelines on funding rules for this nascent field.
Biologists say they need clearer guidelines on funding rules for this nascent field.
A microscopic photo of a human embryo with four cells
Journal Article
California’s vote to revive controversial stem-cell institute sparks debate
2020
The California Institute for Regenerative Medicine will receive billions in state funding — but some scientists oppose the plan.
California's vote to revive stem-cell institute sparks debate
The California Institute for Regenerative Medicine will receive billions in state funding — but some scientists oppose the plan.
Journal Article
Sanger whistle-blowers dispute findings that cleared management of bullying
2018
Current and former employees say investigation at the Wellcome Sanger Institute was flawed; the genomics powerhouse stands by the findings.
Current and former employees say investigation at the Wellcome Sanger Institute was flawed; the genomics powerhouse stands by the findings.
Journal Article
Non-Financial Conflicts of Interest in Academic Grant Evaluation: A Qualitative Study of Multiple Stakeholders in France
by
Tubach, Florence
,
Perrey, Christophe
,
Amiel, Philippe
in
Bias
,
Biomedical Research
,
Biomedical Research - ethics
2012
Peer review is the most widely used method for evaluating grant applications in clinical research. Criticisms of peer review include lack of equity, suspicion of biases, and conflicts of interest (CoI). CoIs raise questions of fairness, transparency, and trust in grant allocation. Few observational studies have assessed these issues. We report the results of a qualitative study on reviewers' and applicants' perceptions and experiences of CoIs in reviews of French academic grant applications.
We designed a qualitative study using semi-structured interviews and direct observation. We asked members of assessment panels, external reviewers, and applicants to participate in semi-structured interviews. Two independent researchers conducted in-depth reviews and line-by-line coding of all transcribed interviews, which were also subjected to Tropes® software text analysis, to detect and qualify themes associated with CoIs. Most participants (73/98) spontaneously reported that non-financial CoIs predominated over financial CoIs. Non-financial CoIs mainly involved rivalry among disciplines, cronyism, and geographic and academic biases. However, none of the participants challenged the validity of peer review. Reviewers who felt they might be affected by CoIs said they reacted in a variety of ways: routine refusal to review, routine attempt to conduct an impartial review, or decision on a case-by-case basis. Multiple means of managing non-financial CoIs were suggested, including increased transparency throughout the review process, with public disclosure of non-financial CoIs, and careful selection of independent reviewers, including foreign experts and methodologists.
Our study underscores the importance of considering non-financial CoIs when reviewing research grant applications, in addition to financial CoIs. Specific measures are needed to prevent a negative impact of non-financial CoIs on the fairness of resource allocation. Whether and how public disclosure of non-financial CoIs should be accomplished remains debatable.
Journal Article
Corporate Funding for Schools of Public Health: Confronting the Ethical and Economic Challenges
2016
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.
Journal Article
US agency to lift ban on funding human–animal hybrids
2016
Researchers in the United States will soon be able to resume creating chimaera-based projects.
Journal Article