Eliciting meta consent for future secondary research use of health data using a smartphone application - a proof of concept study in the Danish population

BMC Medical Ethics 18 (1):51 (2017)
  Copy   BIBTEX


The increased use of information technology in every day health care creates vast amounts of stored health data that can be used for research. The secondary research use of routinely collected data raises questions about appropriate consent mechanisms for such use. One option is meta consent where individuals state their own consent preferences in relation to future use of their data, e.g. whether they want the data to be accessible to researchers under conditions of specific consent, broad consent, blanket consent or not at all. This study investigates whether meta consent preferences can be successfully elicited by a smartphone application in the adult Danish population. A smartphone app was developed for the elicitation of meta consent preferences. An invitation to use the app was distributed to a stratified, representative sample of the Danish adult population. The meta consent choices, the use of the app, user experience data, and demographic data were logged and analysed statistically using IBM SPSS version 20. Of 1000 potential respondents 221 used the app. One hundred eighty-eight of the respondents were female and 103 male. The age range was 19 to 79 years with an average of 51 years. Most users indicate 1) that they find the choices they are asked to make easy to understand, 2) that the application is easy to use, and 3) that this kind of choice should be offered to people. It is possible to collect meta consent preferences in the general, adult population using a smartphone app.



    Upload a copy of this work     Papers currently archived: 92,347

External links

Setup an account with your affiliations in order to access resources via your University's proxy server

Through your library

Similar books and articles

Does Consent Bias Research?Mark A. Rothstein & Abigail B. Shoben - 2013 - American Journal of Bioethics 13 (4):27 - 37.
Biobanks--When is Re-consent Necessary?K. S. Steinsbekk & B. Solberg - 2011 - Public Health Ethics 4 (3):236-250.
Waving Goodbye to Waivers of Consent.Jeffrey R. Botkin - 2015 - Hastings Center Report 45 (6):inside back cover-inside back co.


Added to PP

29 (#554,604)

6 months
12 (#221,514)

Historical graph of downloads
How can I increase my downloads?

References found in this work

Broadening consent--and diluting ethics?B. Hofmann - 2009 - Journal of Medical Ethics 35 (2):125-129.
In Defense of Broad Consent.Gert Helgesson - 2012 - Cambridge Quarterly of Healthcare Ethics 21 (1):40-50.
Informed consent and routinisation.Thomas Ploug & Soren Holm - 2013 - Journal of Medical Ethics 39 (4):214-218.

View all 13 references / Add more references