Matches in SemOpenAlex for { <https://semopenalex.org/work/W2421286593> ?p ?o ?g. }
Showing items 1 to 78 of
78
with 100 items per page.
- W2421286593 endingPage "40" @default.
- W2421286593 startingPage "36" @default.
- W2421286593 abstract "A characteristic feature of the development of health-related social networks is the emergence of internet-based virtual communities, composed of patients. These communities go beyond the mere interchange of information concerning their conditions, intervening in the planning and execution of clinical research, including randomised controlled trials, in collaboration with health professionals. That was the case, in 2009, when patients suffering amyotrophic lateral sclerosis, a rare and severe disease, conducted a clinical trial in USA, organising themselves through an online platform. This initiative launched a new model for the planning and conduction of clinical research: Participants-Led Research (PLR). The distinctive particularities of this new research paradigm represent a challenge to the traditional standards used for judging the ethical soundness of clinical investigation. That is the case, for example, of informed consent. This article aims at identifying the ethical, legal, and social issues (ELSI) posed by PLR and the relevant concepts that may help in solving them. The following issues, in particular, are analysed, that may give place to a new social contract for the ethical assessment of clinical research: consent for participating in research and personal integrity; data protection and confidentiality; benefits sharing and intellectual property." @default.
- W2421286593 created "2016-06-24" @default.
- W2421286593 creator A5044851240 @default.
- W2421286593 creator A5070330140 @default.
- W2421286593 creator A5078699906 @default.
- W2421286593 date "2016-01-01" @default.
- W2421286593 modified "2023-09-30" @default.
- W2421286593 title "A New Challenge to Research Ethics: Patients-Led Research (PLR) and the Role of Internet Based Social Networks." @default.
- W2421286593 hasPubMedId "https://pubmed.ncbi.nlm.nih.gov/27071872" @default.
- W2421286593 hasPublicationYear "2016" @default.
- W2421286593 type Work @default.
- W2421286593 sameAs 2421286593 @default.
- W2421286593 citedByCount "3" @default.
- W2421286593 countsByYear W24212865932017 @default.
- W2421286593 countsByYear W24212865932022 @default.
- W2421286593 countsByYear W24212865932023 @default.
- W2421286593 crossrefType "journal-article" @default.
- W2421286593 hasAuthorship W2421286593A5044851240 @default.
- W2421286593 hasAuthorship W2421286593A5070330140 @default.
- W2421286593 hasAuthorship W2421286593A5078699906 @default.
- W2421286593 hasConcept C108827166 @default.
- W2421286593 hasConcept C110875604 @default.
- W2421286593 hasConcept C118552586 @default.
- W2421286593 hasConcept C127413603 @default.
- W2421286593 hasConcept C136764020 @default.
- W2421286593 hasConcept C142724271 @default.
- W2421286593 hasConcept C153997805 @default.
- W2421286593 hasConcept C15744967 @default.
- W2421286593 hasConcept C17744445 @default.
- W2421286593 hasConcept C199539241 @default.
- W2421286593 hasConcept C204787440 @default.
- W2421286593 hasConcept C34974158 @default.
- W2421286593 hasConcept C39549134 @default.
- W2421286593 hasConcept C41008148 @default.
- W2421286593 hasConcept C535046627 @default.
- W2421286593 hasConcept C55587333 @default.
- W2421286593 hasConcept C68122502 @default.
- W2421286593 hasConcept C71745522 @default.
- W2421286593 hasConcept C71924100 @default.
- W2421286593 hasConceptScore W2421286593C108827166 @default.
- W2421286593 hasConceptScore W2421286593C110875604 @default.
- W2421286593 hasConceptScore W2421286593C118552586 @default.
- W2421286593 hasConceptScore W2421286593C127413603 @default.
- W2421286593 hasConceptScore W2421286593C136764020 @default.
- W2421286593 hasConceptScore W2421286593C142724271 @default.
- W2421286593 hasConceptScore W2421286593C153997805 @default.
- W2421286593 hasConceptScore W2421286593C15744967 @default.
- W2421286593 hasConceptScore W2421286593C17744445 @default.
- W2421286593 hasConceptScore W2421286593C199539241 @default.
- W2421286593 hasConceptScore W2421286593C204787440 @default.
- W2421286593 hasConceptScore W2421286593C34974158 @default.
- W2421286593 hasConceptScore W2421286593C39549134 @default.
- W2421286593 hasConceptScore W2421286593C41008148 @default.
- W2421286593 hasConceptScore W2421286593C535046627 @default.
- W2421286593 hasConceptScore W2421286593C55587333 @default.
- W2421286593 hasConceptScore W2421286593C68122502 @default.
- W2421286593 hasConceptScore W2421286593C71745522 @default.
- W2421286593 hasConceptScore W2421286593C71924100 @default.
- W2421286593 hasLocation W24212865931 @default.
- W2421286593 hasOpenAccess W2421286593 @default.
- W2421286593 hasPrimaryLocation W24212865931 @default.
- W2421286593 hasRelatedWork W113875495 @default.
- W2421286593 hasRelatedWork W1533191804 @default.
- W2421286593 hasRelatedWork W2023707498 @default.
- W2421286593 hasRelatedWork W2130956545 @default.
- W2421286593 hasRelatedWork W2172268715 @default.
- W2421286593 hasRelatedWork W2412419671 @default.
- W2421286593 hasRelatedWork W2462837067 @default.
- W2421286593 hasRelatedWork W2555835743 @default.
- W2421286593 hasRelatedWork W2914252756 @default.
- W2421286593 hasRelatedWork W2926233674 @default.
- W2421286593 hasVolume "221" @default.
- W2421286593 isParatext "false" @default.
- W2421286593 isRetracted "false" @default.
- W2421286593 magId "2421286593" @default.
- W2421286593 workType "article" @default.