Readability of informed consent forms for whole-exome and whole-genome sequencing

Downloadstatistik des Dokuments (Auswertung nach COUNTER):

Niemiec, E.; Vears, D.F.; Borry, P.; Howard, H.C.: Readability of informed consent forms for whole-exome and whole-genome sequencing. In: Journal of Community Genetics 2017 (2017), S. 1-9. DOI: https://doi.org/10.1007/s12687-017-0324-6

Version im Repositorium

Zum Zitieren der Version im Repositorium verwenden Sie bitte diesen DOI: https://doi.org/10.15488/2039

Zeitraum, für den die Download-Zahlen angezeigt werden:

Jahr: 
Monat: 

Summe der Downloads: 121




Kleine Vorschau
Zusammenfassung: 
Whole-exome and whole-genome sequencing (WES, WGS) can generate an unprecedented amount of complex information, making the informed consent (IC) process challenging. The aim of our study was to assess the readability of English IC forms for clinical whole-exome and whole-genome sequencing using the SMOG and Flesch-Kincaid formulas. We analysed 36 forms, most of which were from US providers. The median readability grade levels were 14.75 (the SMOG formula) and 12.2 (the Flesch-Kincaid formula); these values indicate the years of education after which a person would be able to understand a text studied. All forms studied seem to fail to meet the average recommended readability grade level of 8 (e.g. by Institutional Review Boards of US medical schools) for IC forms, indicating that the content of the forms may not be comprehensible to many patients. The sections aimed at health care professionals (HCPs) in the forms indicate that HCPs should be responsible for explaining IC information to the patients. However, WES and WGS may be increasingly offered by primary care professionals who may not (yet) have sufficient training to be able to communicate effectively with patients about genomics. Therefore, to secure an adequate, truly informed consent process, the task of developing good, legible examples of IC forms along with educating HCPs in genomics should be taken seriously, and adequate resources should be allocated to enable these tasks.
Lizenzbestimmungen: CC BY 4.0 Unported
Publikationstyp: Article
Publikationsstatus: publishedVersion
Erstveröffentlichung: 2017
Die Publikation erscheint in Sammlung(en):Forschungszentren

Verteilung der Downloads über den gewählten Zeitraum:

Herkunft der Downloads nach Ländern:

Pos. Land Downloads
Anzahl Proz.
1 image of flag of Germany Germany 70 57,85%
2 image of flag of United States United States 19 15,70%
3 image of flag of China China 9 7,44%
4 image of flag of No geo information available No geo information available 4 3,31%
5 image of flag of Canada Canada 4 3,31%
6 image of flag of Czech Republic Czech Republic 3 2,48%
7 image of flag of Sweden Sweden 2 1,65%
8 image of flag of Taiwan Taiwan 1 0,83%
9 image of flag of Russian Federation Russian Federation 1 0,83%
10 image of flag of New Zealand New Zealand 1 0,83%
    andere 7 5,79%

Weitere Download-Zahlen und Ranglisten:


Hinweis

Zur Erhebung der Downloadstatistiken kommen entsprechend dem „COUNTER Code of Practice for e-Resources“ international anerkannte Regeln und Normen zur Anwendung. COUNTER ist eine internationale Non-Profit-Organisation, in der Bibliotheksverbände, Datenbankanbieter und Verlage gemeinsam an Standards zur Erhebung, Speicherung und Verarbeitung von Nutzungsdaten elektronischer Ressourcen arbeiten, welche so Objektivität und Vergleichbarkeit gewährleisten sollen. Es werden hierbei ausschließlich Zugriffe auf die entsprechenden Volltexte ausgewertet, keine Aufrufe der Website an sich.