Patient views on research use of clinical data without consent: Legal, but also acceptable?

Clinical research without consent in adults in the emergency setting: a review of patient and public views

BACKGROUND In emergency research, obtaining informed consent can be problematic. Research to develop and improve treatments for patients admitted to hospital with life-threatening and debilitating conditions is much needed yet the issue of research without consent (RWC) raises concerns about unethical practices and the loss of individual autonomy. Consistent with the policy and practice turn to...

The acceptability of conducting data linkage research without obtaining consent: lay people’s views and justifications

BACKGROUND A key ethical issue arising in data linkage research relates to consent requirements. Patients' consent preferences in the context of health research have been explored but their consent preferences regarding data linkage specifically have been under-explored. In addition, the views on data linkage are often those of patient groups. As a result, little is known about lay people's vie...

Public attitudes towards the use of primary care patient record data in medical research without consent: a qualitative study.

OBJECTIVES Recent legislative changes within the United Kingdom have stimulated professional debate about access to patient data within research. However, there is currently little awareness of public views about such research. The authors sought to explore attitudes of the public, and their lay representatives, towards the use of primary care medical record data for research when patient conse...

Proxy consent to research: the legal landscape.

An ethical framework for sharing patient data without consent.

BACKGROUND There is no consensus on how to share patient records privately. Data privacy concepts are surveyed and a framework is presented for the safe sharing of sensitive data. It is argued that tailoring the data sharing to the privacy breach risks of each project holds out the best compromise for keeping the trust of the public and providing for the best quality data where detailed patient...