Getting a patient’s consent for publication
BMJ 2008; 337 doi: https://doi.org/10.1136/bmj.a1633 (Published 11 September 2008) Cite this as: BMJ 2008;337:a1633All rapid responses
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The paper rejected by the BMJ but subsequently published by the
Journal of Paediatrics and Child Health raises a further issue. What
happens to those papers the BMJ committee rejected?
Following permission
we reviewed the committee's minutes and documentation for the period 2004-2005 and identified 6 papers rejected on ethical grounds and subsequently
published elsewhere in a form which did not take account of the ethical
recommendations of the committee. This was a snapshot view and we cannot
guarantee that all such papers were picked up. We contacted all 6 lead
authors but only received replies from 3 agreeing to further discussion of
the problem and permission to quote their own paper. Hence we cannot be
more specific than state that:
Two failed to get consent, one used an intrinsically unethical
intervention, one relied on previously published papers by the same author
which were highly questionable in terms of data presented, one presented
data that had already been published by the BMJ and this was not made
clear in the new submission but was offered as 'new data' and one was
rejected on the grounds that ethical approval had not been sought.
Clearly this raises issues about differing practices or standards in
different journals. It also raises the issue that perhaps any submitted
paper to any journal needs to confirm whether it has previously been
rejected by another journal and if so on what grounds.
Competing interests:
NP is a member of the BMJ Ethics Committee
SS works at the BMJ
Competing interests: No competing interests
This article was timely for me - I was poised this weekend to submit
a Personal View to BMJ on the frustrations of publication in the field of
non-accidental injury. In this situation the public good and protection of
children must (to a sensible person on a Clapham omnibus) supersede the
difficulty or impossibility of gaining consent from the person with
parental responsibility.
I and others have submitted case reports / case series to BMJ publishing
journals and either had to resubmit or submit elsewhere to circumvent this
politically correct bureaucracy. Meanwhile paediatricians are slammed by
the courts and the GMC for a lack of evidence base to their beliefs.
My case report will be resubmitted this week now I have consent from the
new adoptive parents, one year on. What was the point of this? What do
they have to do with what happened in this child's infancy?
While I fully respect that BMJ publishing has sought legal advice, this
advice is defensive and failing to see the bigger picture of the reasons
why doctors share research and experience.
Competing interests:
None declared
Competing interests: No competing interests
I think it is ludicrous that current laws require consent from the
patient prior to publishing case reports.The very cases that merit a
report are the difficult ones with clinical dilemmas, often the patient
has died. The very last thing any doctor is about to say to parents is "
by the way do you mind if we write up this case?" The only situation where
I think consent is necessary is if photographs, which may clearly identify
the patient are used.
Otherwise there is a long tradition of case reporting in the medical
literature, so long as patient anonymity is maintained, I see no reason to
ask for consent.
Competing interests:
None declared
Competing interests: No competing interests
The debate on consent for publication reminded me of a recent
experience. I hoped to submit a case report for publication but was
unsuccessful in obtaining written consent from the parents of the child.
The parents were of Somali origin and they were unfamiliar with the
concept of medical journals. We arranged face to face discussions,
provided written information and offered the service of an interpreter,
which was declined.The mother was initially receptive to the idea of
publication but preferred her husband to make a decision on consent. The
father felt that culturally it would be inappropriate to discuss his
child's illness publicly. He further explained that he could not
understand the need for his formal written consent if the case details had
been anonymised anyway.
The episode suggested to me that educational and cultural background
can influence willingness to consent for publication. Colleagues tell me
that they have had similar experiences. If so, could this lead to
publication bias in the literature?
Competing interests:
None declared
Competing interests: No competing interests
As a clinician working with people with learning disability, I read
this article with great interest. I cannot agree more with the author's
view regarding the importance of consent and patient doctor relationship.
In our patient groups with varying level of disabilities, issues around
capacity to consent, confidentiality etc becomes even more relevant. How
far to-date reluctance and perceived difficulties in overcoming these grey
areas have led to the general lack of good quality evidence in the field
of learning disability? Mental Capacity Act 2005 make specific
recommendations regarding issues around consent for research, publication
etc.This hopefully will be the right step towards safeguarding the rights
of our vulnerable group of patients.
Competing interests:
None declared
Competing interests: No competing interests
I agree with the BMJ insisting on consent for the paper. The reasons
the authors gave as not seeking consent was for fear of straining the
fragile relationship with the parents further, but, consider what would
happen if the patient found out the doctor had published their case
without their knowledge.
This would have furher alienated the parents and force them to become
distrustful of their doctors which isn't good for the patient, his or her
carers or the doctors involved.
Competing interests:
None declared
Competing interests: No competing interests
Information in medicine is gleaned as much from anecdotes and
eminence based opinion as it is from evidence based fact. Case reports are
excellent educational tools as the stories they tell reflect medicine as
it happens in the real world. The vast majority of patients provide
consent to publication of their case details. An equally large number of
patients are not bothered about their details being published as long as
their names are anonymised. I could give you an example but I'll probably
need to get the patient’s consent before the BMJ publishes this rapid
response. Most patients are flattered and excited about ‘their claim to
fame’ when they are approached about being the subject of a case report.
We have no option but to move with the times. As data protection laws
are tightened we have to accept that the days of unconsented case reports
are over. Should these rules of consent govern other forums of
discussion? What about case reports that are presented at conferences as
posters or oral presentations? If these rules of consent become mandatory
then the hassle factor of tracking down long forgotten but interesting
patients may just lead to the demise of the ubiquitous case report.
Competing interests:
None declared
Competing interests: No competing interests
PC versus common sense
Quite a few years ago I submitted for publication a case of
generalised vascular occlusion (which proved rapidly fatal) in an
asymptomatic patient which had been picked up by a routine physical
examination. The event had occurred eighteen years before the submission,
in a non-English speaking country. The case report was turned down because
of lack of consent by the next-of-kin. When I asked the editor involved
how ethical it would be to approach a total stranger (assuming I could
trace one) and ask for permission to publish the anonymous history of a
forgotten relative's final illness and demise I was referred to the
journal's consent policy.
At the end of the day, journal editors have the final say on what
they want to publish, and on what terms. However, in these days of
political correctness case reports may eventually be reduced to something
like "Once upon a time a certain doctor diagnosed a certain patient as
suffering from a certain illness, which had a certain unexpected outcome".
Such a format is totally bland, its educational value is zilch, but at
least it steps on nobody's political toes.
Competing interests:
None declared
Competing interests: No competing interests