Re: Reporting research findings to participants is an ethical imperative
I share Jeremy Taylor`s interest in improving participants experience of trials generally. [1] I should, however, like to draw attention to a phrase in the World Medical Association`s Declaration of Helsinki which he quoted, viz. “… should be given the option…”. Not all participants want to know the trial results. A small minority express the desire “to get on with the rest of their lives” rather than have the memory of perhaps facing a life-threatening condition and trial participation brought back to them some years later when trial results are available. In practice, this can be dealt with by posing that question in the trial`s consent form. This method also has the advantage of drawing attention to this matter to all those involved in the administration and running of the trial.
I should like to make a plea for consistency in use of the word `participant` throughout. `Research subjects` (second paragraph) should be avoided, giving, as it does, a sense of people being subjugated in the research endeavour, rather than being joint collaborators in the quest for better understanding of therapies.
Help is at hand for anyone wishing to better understand what testing treatments involves, be they citizen, patient, health professional or other. [2] www.testingtreatments.org/the-book/
[2] Evans I, Thornton H, Chalmers I, Glasziou P. Testing treatments: better research for better healthcare – Second Edition. Pinter and Martin, London. 2011. ISBN 978-1-905177-48-6 Free download from www.testingtreatments.org/the-book/
Competing interests:
No competing interests
04 November 2019
Hazel Thornton
Honorary Visiting Fellow, Department of Health Sciences
n/a
University of Leicester
"Saionara", 31 Regent Street, Rowhedge, Colchester, CO5 7EA UK
Rapid Response:
Re: Reporting research findings to participants is an ethical imperative
I share Jeremy Taylor`s interest in improving participants experience of trials generally. [1] I should, however, like to draw attention to a phrase in the World Medical Association`s Declaration of Helsinki which he quoted, viz. “… should be given the option…”. Not all participants want to know the trial results. A small minority express the desire “to get on with the rest of their lives” rather than have the memory of perhaps facing a life-threatening condition and trial participation brought back to them some years later when trial results are available. In practice, this can be dealt with by posing that question in the trial`s consent form. This method also has the advantage of drawing attention to this matter to all those involved in the administration and running of the trial.
I should like to make a plea for consistency in use of the word `participant` throughout. `Research subjects` (second paragraph) should be avoided, giving, as it does, a sense of people being subjugated in the research endeavour, rather than being joint collaborators in the quest for better understanding of therapies.
Help is at hand for anyone wishing to better understand what testing treatments involves, be they citizen, patient, health professional or other. [2] www.testingtreatments.org/the-book/
[1] Jeremy Taylor. Reporting research findings to participants is an ethical imperative. BMJ 2019;367:l6324 https://www.bmj.com/content/367/bmj.l6324
[2] Evans I, Thornton H, Chalmers I, Glasziou P. Testing treatments: better research for better healthcare – Second Edition. Pinter and Martin, London. 2011. ISBN 978-1-905177-48-6 Free download from www.testingtreatments.org/the-book/
Competing interests: No competing interests