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Direct-to-consumer carrier screening for cystic fibrosis via a hospital website: a 6-year evaluation.

ABSTRACT: A Dutch university hospital started offering cystic fibrosis (CF) carrier screening directly to consumers (DTC) through their website in 2010. A 6-year process evaluation was conducted to evaluate the offer. Screening was implemented as intended. However, uptake was lower than expected. Forty-four tests have been requested, partly by couples with a positive family history for CF, which was not the intended target group. Users were generally positive about the screening offer, citing accessibility, ease of testing, anonymity, and perceived shortcomings of regular healthcare as reasons for requesting screening. DTC CF carrier screening via a university hospital website is feasible, but is seldom used. Considering technological advances, continuation of this specific offer is questionable.

SUBMITTER: Holtkamp KCA

PROVIDER: S-EPMC6435772 | biostudies-literature | 2019 Apr

REPOSITORIES: biostudies-literature

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Direct-to-consumer carrier screening for cystic fibrosis via a hospital website: a 6-year evaluation.

Holtkamp Kim C A KCA Henneman Lidewij L Gille Johan J P JJP Meijers-Heijboer Hanne H Cornel Martina C MC Lakeman Phillis P

Journal of community genetics 20180918 2

A Dutch university hospital started offering cystic fibrosis (CF) carrier screening directly to consumers (DTC) through their website in 2010. A 6-year process evaluation was conducted to evaluate the offer. Screening was implemented as intended. However, uptake was lower than expected. Forty-four tests have been requested, partly by couples with a positive family history for CF, which was not the intended target group. Users were generally positive about the screening offer, citing accessibilit ...[more]

PMID: 30229537

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