Subject(s)
Biomedical Research , National Institutes of Health (U.S.) , Peer Review, Research , Prejudice , Bias , National Institutes of Health (U.S.)/legislation & jurisprudence , Peer Review, Research/legislation & jurisprudence , Peer Review, Research/methods , Peer Review, Research/standards , Peer Review, Research/trends , United States , Prejudice/prevention & control , Prejudice/trends , Financing, Organized/legislation & jurisprudence , Financing, Organized/organization & administration , Financing, Organized/standards , Financing, Organized/trendsSubject(s)
Black or African American/education , Budgets/legislation & jurisprudence , Federal Government , Racism/prevention & control , Research Personnel/economics , Research Personnel/education , Universities/economics , Budgets/trends , Financing, Organized/economics , Financing, Organized/legislation & jurisprudence , Financing, Organized/trends , Humans , Minority Groups/education , Research Personnel/standards , United States , Universities/standardsSubject(s)
Internationality/legislation & jurisprudence , Research Support as Topic/legislation & jurisprudence , Research , Security Measures/legislation & jurisprudence , Theft/legislation & jurisprudence , Theft/prevention & control , Universities , China , Financing, Organized/legislation & jurisprudence , Guidelines as Topic , National Institutes of Health (U.S.)/legislation & jurisprudence , Politics , Racism/ethics , Racism/prevention & control , Research/economics , United StatesSubject(s)
Allergy and Immunology , Asian People , Plagiarism , Research Personnel/legislation & jurisprudence , Scientific Misconduct , Allergy and Immunology/ethics , Allergy and Immunology/legislation & jurisprudence , China , Financing, Organized/legislation & jurisprudence , Humans , Research Personnel/economics , Research Personnel/ethics , Scientific Misconduct/legislation & jurisprudenceSubject(s)
Authorship , Open Access Publishing/legislation & jurisprudence , Periodicals as Topic , Research Personnel , Financing, Organized/legislation & jurisprudence , Open Access Publishing/economics , Periodicals as Topic/economics , Research Personnel/economics , Research Support as Topic/economics , Research Support as Topic/legislation & jurisprudenceSubject(s)
European Union , Financing, Organized/legislation & jurisprudence , Financing, Organized/organization & administration , Gender Identity , Research Design , Research Support as Topic/legislation & jurisprudence , Research Support as Topic/organization & administration , Sex , Animals , Canada , Clinical Trials as Topic/methods , Female , Financing, Organized/economics , Global Warming , Humans , Male , Research Design/legislation & jurisprudence , Research Design/standards , Research Personnel/education , Research Personnel/standards , Research Support as Topic/economics , Sex Characteristics , Sex Factors , Sex Ratio , Turtles/physiology , United StatesSubject(s)
Financing, Organized/legislation & jurisprudence , Internationality/legislation & jurisprudence , Research Personnel/ethics , Research Personnel/legislation & jurisprudence , Research Support as Topic/legislation & jurisprudence , United States Government Agencies/legislation & jurisprudence , China , Confidentiality/legislation & jurisprudence , Conflict of Interest/legislation & jurisprudence , Financing, Organized/organization & administration , Fraud/legislation & jurisprudence , National Institutes of Health (U.S.)/economics , National Institutes of Health (U.S.)/legislation & jurisprudence , Personnel Selection/ethics , Personnel Selection/legislation & jurisprudence , Research Support as Topic/ethics , United States , United States Government Agencies/economics , Universities/economics , Universities/legislation & jurisprudenceSubject(s)
Bullying/prevention & control , Financing, Organized/legislation & jurisprudence , National Institutes of Health (U.S.)/legislation & jurisprudence , Research Personnel , Sexual Harassment/legislation & jurisprudence , Sexual Harassment/prevention & control , Universities , Conflict of Interest , Female , Financing, Organized/organization & administration , Humans , Male , United StatesSubject(s)
Federal Government , Research Personnel/legislation & jurisprudence , Research , Theft/legislation & jurisprudence , United States Government Agencies/legislation & jurisprudence , United States Government Agencies/organization & administration , Universities/organization & administration , China , Conflict of Interest/legislation & jurisprudence , Financing, Organized/legislation & jurisprudence , Financing, Organized/organization & administration , Foreign Professional Personnel/legislation & jurisprudence , Intellectual Property , Internationality , National Institutes of Health (U.S.)/economics , National Institutes of Health (U.S.)/legislation & jurisprudence , National Institutes of Health (U.S.)/organization & administration , United States , Universities/economicsSubject(s)
Embryo Research/economics , Embryo Research/legislation & jurisprudence , Embryo, Mammalian/cytology , Federal Government , Financing, Government/legislation & jurisprudence , Models, Biological , Research Support as Topic/legislation & jurisprudence , Embryo Research/ethics , Embryo, Mammalian/embryology , Embryoid Bodies/cytology , Female , Fetus , Financing, Organized/ethics , Financing, Organized/legislation & jurisprudence , Financing, Organized/organization & administration , Guidelines as Topic , Humans , Male , National Institutes of Health (U.S.)/economics , United StatesABSTRACT
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.