Response to commentaries on ‘Should free-text data in electronic medical records be shared for research? A citizens’ jury study in the UK’

Journal of Medical Ethics 46 (6):384-385 (2020)
  Copy   BIBTEX

Abstract

We note a range of interesting and challenging points which take forward the discourse around the ethics of sharing patient data. Of most note are criticisms of our jury recruitment and methods; questioning how we can engender trust and support from the wider, uninformed public when we only have the view of a small informed public; asking what work needs to be done to ethically transfer data from a clinical care setting to that of research; suggesting that dynamic consent with opt-outs could be an avenue for allowing patients more control over the use of their medical data for research; and asking how we bridge from ‘is’ to ‘ought’. The first criticisms to be addressed focus on the recruitment and methods of our jury, raised by Carter.1 She suggests that the selection of participants, using a population distribution of responses to a data-sharing question, resulted in a jury too positively oriented to data sharing at the outset. Further, she suggests that we counted individual votes rather than allowing the jury to come to a collective position, that jurors were not asked to prioritise the common good, that we present a lack of data from the jury’s deliberations, and as a result, there is a difficulty with evaluating the reasoning and authenticity of deliberation. Regarding recruitment of our jury, our stated aim, which we acknowledge is not shared by all juries, was to achieve a sample which broadly matched what we would expect if …

Links

PhilArchive



    Upload a copy of this work     Papers currently archived: 76,168

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

Personal Care in Learning Health Care Systems.Franklin G. Miller & Scott Y. H. Kim - 2015 - Kennedy Institute of Ethics Journal 25 (4):419-435.
Research on Medical Records Without Informed Consent.Franklin G. Miller - 2008 - Journal of Law, Medicine and Ethics 36 (3):560-566.
A regulatory framework for telemedicine in Indonesia.Adi Sulistiyono, Rani Tiyas Budiyanti & Sriatmi - 2019 - Eubios Journal of Asian and International Bioethics 29 (4):126-131.

Analytics

Added to PP
2020-05-27

Downloads
1 (#1,499,153)

6 months
1 (#448,551)

Historical graph of downloads

Sorry, there are not enough data points to plot this chart.
How can I increase my downloads?

Author's Profile

Malcolm Oswald
University of Manchester

Citations of this work

No citations found.

Add more citations