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Readability of informed consent forms for whole-exome and whole-genome sequencing
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.ORCID iD: 0000-0001-6149-5498
2018 (English)In: Journal of Community Genetics, ISSN 1868-310X, E-ISSN 1868-6001, Vol. 9, no 2, p. 143-151Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2018. Vol. 9, no 2, p. 143-151
Keywords [en]
Genetic counselling, Informed consent, Readability, Whole exome sequencing, Whole genome sequencing
National Category
Medical Ethics
Research subject
Bioethics
Identifiers
URN: urn:nbn:se:uu:diva-342730DOI: 10.1007/s12687-017-0324-6ISI: 000427515200004PubMedID: 28856579ISBN: 1868-310X (Print) 1868-310X (Linking) OAI: oai:DiVA.org:uu-342730DiVA, id: diva2:1186597
Funder
Riksbankens Jubileumsfond, M13-0260:1Available from: 2018-02-28 Created: 2018-02-28 Last updated: 2018-05-29Bibliographically approved

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