Consent to the publication of patient information
BMJ 2004; 329 doi: https://doi.org/10.1136/bmj.329.7465.566 (Published 02 September 2004) Cite this as: BMJ 2004;329:566
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Patient’s carers often write in support groups, articles, books about
their
child’s condition particularly if it is rare. They look for others for
support,
ideas and knowledge. It is through this they advocate, educate and this
includes medical professionals. I know of a number of children that have
been diagnosed as a result of one of my articles.
It is the parents of these complex cases that know about their
child’s
condition because it is they that have to deal with the numerous issues
involved. As it was reported to me on many occasion – I know far more
about
my child than anybody else.
In my loft there are four A4 files of notes from a number of
hospitals. What
hurts me most is the three/four pages of retrospective notes that appear
in
his notes from one hospital that bear no relation to the 8 years of his
life
written some 3 weeks after his death neither is there any comment on his
deteriorating heart condition (which should have been the over-riding
cause
of concern) which was the cause of death.
During the last six months of my son's life, we also had a right to
be told how
seriously ill my child was, the results of echocardiograms, ECGs, X-rays,
blood results. It is odd how these were withheld until after my son's
Inquest.
The comments are hurtful, unwarranted and a complete non-sense and
yet I
cannot get them removed nor have ever had an apology from the hospital/
doctors concerned. This is not ethical, moral or correct yet it has been
done.
It was deceitful and has caused considerable distress at a time when I was
grieving. It has led to a considerable lack of trust of doctors whom I
thought
I had trusted.
The GMC/DOH/doctors as a whole need to address the issue of
Munchausen
syndrome by proxy, exaggeration, fabrication, somatization in people with
known diagnosis and prognosis. The guidance on Factitious Illness does
not
protect the genuine ill child/baby with a complex condition whose disease
may complicate or not go according to plan or a lack of understanding by a
doctor/paediatrician who is fixated by Munchausen's. It offers them NO
protection whatsoever and the diagnose should not be an excuse to avoid
doctors own competence trying to avoid medical negligence and instead
focusing on the mother's genuine anxieties about her child's heath
particularly where their child's problems are wholly consistent with their
child's diagnosis. It is completely wrong and unethical.
Competing interests:
None declared
Competing interests: No competing interests
Fiona Woollard points to the GMC guidance on publication after a
child's death. The BMA or GP Ethics Committee is not in a position to
override it. As some doctors are obviously still not updating themselves
they should surely be obliged to prove knowledge of the most recent
guidance, on revalidation.
Information about GMC Guidance is is easy to access, for public with
access to the web,and practioners alike. Overall doctors should not abuse
their postion;should provide those who consult tem with nformation; those
in management positions, such as some members of the ethics committee,
additionally have an obligation to ensure that fellow practitioners follow
GMC guidance. (Paraphrased from GMC website).
Specific to the BMJ's Ethic's committee's the proposal to have the
right to breach confidence by publishing fifteen years after a person's
death; The GMC Guidance; 'Confidentiality; Protecting and Provising
Information clearly states that a doctor has an obligation to keep
information confidential after a person dies'.
There are a few exceptions and some will find loopholes in this
rather than comply, but crucially a doctor has an obligation to respect
persons' wishes.Who more than the parents have the right to decide after
the death of a child - to override them is dehumanising. The distresss
caused to Fioan Wollard could easily have been avoided by treating her
with proper respect and by conforming to the GMC guidelines.
The decision to publish a persons' medical information because he
lived abroad, ie not in the UK (editorial on work of the BMJ cttee), was
flawed on several counts; it is deceitful, based on the old mind set of
what 'they' don't know, won't hurt 'them'; it ws ok to publish somebody
from another country but not the UK.The 'get out' used to be aplied to UK
citizens and upheld by the GMC a decade ago; are 'others' subject to
lesser ethical protections?
Ethical issues, including 'consent' are likey to become more complex
with increasing submissions from 'patients' and 'carers' to the BMJ. The
members of the BMJ Ethics committee do not hold regulatory powers and are
already in some sensitive areas, overstepping the mark by proposng to
erode guidelines set up by the GMC after many years of work on updating
the culture of medicine.
Competing interests:
None declared
Competing interests: No competing interests
Perhaps we should widen the debate. Who is responsible for protecting
the confidentiality of patient information when carers or relatives write
about a personal experience. Surely patients deserve the same protection
whether its a doctor or a parent writing the article.
I suggest that the BMJ ethics committee considers the much wider topic of
protecting patient identification irrespective of the authors
qualifications.
Ola Junaid
Competing interests:
None declared
Competing interests: No competing interests
"For this reason, you must obtain express consent from patients
before
publishing personal information about them as individuals in media to
which
the public has access, for example in journals or text books, whether or
not
you believe the patient can be identified. Express consent must therefore
be
sought to the publication of, for example, case-histories about, or
photographs of, patients".
However, the GMC does admit of exceptions in the case of patients who
have
died"
Approximately three years ago, I find that my son's rare heart
malformations
were written up in a cardiology surgery journal. As I come from a medical
family, I had no regrets that it had been done. However, it was
immediately
identifiable to me because he had an absent right subclavian artery, an
interrupted aortic arch, VSD, PDA, ASD. I knew it was him but had I been
given consent for its release, I would have readily agreed. It was right,
however that it was written in the literature because it was rare but it
was the
lack of consent that bothered me.
I do disagree with the exceptions in cases where patients have died.
My son
has since died from sub-aortic stenosis, endocarditis, stroke and
congestive
heart failure. I would hope that the sensitive nature of his case - that
I was
informed of any publication by any of the hospitals involved. Whilst I
would
probably agree to publication, I would also like to know what was written
before suddenly finding it on the Internet in articles such as this.
Over the years, I have found many untruths about me in notes and the
condition as a whole, I would like the facts spelt out properly - the
words
sterotyping seem to come to mind!
We both have the same rare genetic deletion and syndrome and it would
not
surprise me at all that we are written up at some stage in the future.
However, photographs can also cause distress for medical families. We are
easily identifiable but I would like to be asked and I would in turn fully
support the doctor who in turn would write "a true and honest report"
rather
than what they seemed to think at the time.
Fiona Woollard
Competing interests:
None declared
Competing interests: No competing interests
We welcome the views of the BMJ ethics committee [1]. In an article
for the BMJ’s sister journal the Journal of Medical Ethics we drew
attention to some of the obstacles to gaining consent for publication of
case material in ethics [2]. Many of these were highlighted in case
material published by the JME over the previous 20 years. We also reviewed
the policy of several general medical and specialist ethics journals and
found that many, including the JME, gave no instructions on
confidentiality. Given the amount of case material that is used in medical
ethics, this is a significant problem that editors may be addressing in
any one of several ways: editors recognise the problems highlighted both
in our article and in this one and exercise discretion on what to publish;
editors do not think that issues of confidentiality are raised when
(apparently) anonymised case studies are used; editors have not given
sufficient thought to the matter and have no policy; or, editors did not
recognise the issue. We were pleased to read that the BMJ both recognises
the problem and the need for editorial discretion in difficult cases.
We would, however, like to draw attention to two issues that are not
addressed in the article by Singer. First, it may not be possible to
anonymise a case when the relevant ethical issues tend to make it unique.
To cover this possibility, it may be worth revising BMJ policy point 3
(ii) to add the public interest in debating important ethical issues to
the existing two criteria of clinical lesson or public health. Second, as
Newson has noted, the article makes no reference to the problems of
gaining consent for those who are unable to consent for themselves[3]. In
our paper, we pointed out that publication is rarely in the patient’s own
interest (though involving an ethicist in discussions about the patient
might be), so that it is difficult to see the grounds on which consent
could be given – except perhaps that it is not against the interests of
the patient.
Finally, on the question of reporting mistakes, here the issue might
not just be one of the patient’s consent. What of others involved? What if
the mistake was not made by the person hoping to publish the article but
by a colleague or associate? In such cases, should the author gain the
consent of other relevant parties also be gained? If not, why not? And if
not, could the principles for not gaining consent be applied to other
cases – e.g. those where the patient does not wish to consent?
Heather Draper, Senior lecturer in Biomedical Ethics, University of
Birmingham
Wendy Rogers, Associate Professor Medical Ethics and Health Law, Flinders
University.
1. Singer PA. Consent to the publication of patient information. BMJ
2004;329: 566-568.
2. Rogers WA, Draper H. Confidentiality and the ethics of medical
ethics. Journal of Medical Ethics 2003;29: 220-224.
3. Newson AJ. What about incompetent patients? Rapid responses, BMJ
http://bmj.bmjjournals.com/cgi/eletters/329/7465/566
Competing interests:
None declared
Competing interests: No competing interests
Whilst the BMJ Ethics Committee’s revised policy on consent to the
publication of patient information[1] is laudable, an important matter
remains overlooked: publishing cases involving incompetent patients. Much
can be learned from these cases; be it highlighting clinical difficulties
or drawing attention to neglected moral issues. But, the Guidelines as
written may make it impossible to publish them.
Say I wished to publish a case involving a traceable adult with
learning disability who had requested genetic counselling. Turning to the
Guidelines[1], I would be required to obtain her consent prior to
publication. However, obtaining written informed consent from adults with
questionable competence could be difficult or exploitative, as they may
lack the capacity to understand the implications of consent to
publication. Further, the exceptions listed under Point 3 do not apply.
Merely anonymising her information would be ethically problematic, as
could drafting a fictional case ‘inspired’ by the clinical encounter.
And, until the Mental Capacity Bill becomes law, no-one can provide
consent on her behalf. How should we balance the value gained from
publishing these cases with respecting the interests of the people
involved?
Rogers and Draper have already addressed this issue in the context of
medical ethics research and teaching[2]. They argue that using cases with
practical obstacles to obtaining consent can often be justified, inter
alia, by an appeal to public interest arguments, such as the public’s
right to know what clinical and ethical dilemmas doctors face.
Whilst more discussion is required, the BMJ Ethics Committee also
needs to develop practical recommendations for the use of case studies
where the subject cannot provide full informed consent.
1. Singer PA. Consent to the publication of patient information. BMJ
2004;329: 566-568.
2. Rogers WA, Draper H. Confidentiality and the ethics of medical
ethics. Journal of Medical Ethics 2003;29: 220-224.
Competing interests:
None declared
Competing interests: No competing interests
The photograph of "An autopsy in progress" on page 527 of the paper
version in which this paper appears does not seem to comply with BMJ
policy laid out on page 567. Will the BMJ both appologise and set up a
system to ensure that all parts of the journal comply with policy?
Competing interests:
None declared
Competing interests: No competing interests
Many thanks to Dr Ashworth for raising this point about our policy on
images, which we're happy to clarify. Firstly, though, we apologise for
any offence caused by the publication of this photograph.
We obtained the photograph from a picture agency and did not,
therefore, seek any personal consent before publication. This fits with
the BMJ's policy on images, and with the recommendations made by the BMJ's
ethics committee:
"Publication of information including photographs obtained from the
public domain, including wire services and news archives—This information
was obtained from the journalist-subject relationship. The information is
in the public domain and it is ethical to republish it in the BMJ.
...Editors may want to exercise discretion in publishing such information,
but this is a matter of etiquette, not ethics." 1
We will soon be providing updated and expanded advice to contributors
at bmj.com/advice on using images. This guidance will give details to
authors on the technicalities and ethics of choosing, seeking consent and
copyright clearance for, and sending pictures and other illustrations for
publication. An accompanying editorial will explain the BMJ's overall
policy on images, spelling out what we expect from authors and editors.
1 Singer, P. Consent to the publication of patient information. BMJ
2004;329:566-8 (4 September).
Competing interests:
None declared
Competing interests: No competing interests
A. Charles highlights how commonplace it is that many practitioners
are not complying with guidelines which oblige them to inform people of
the right to state their wishes regarding use, or not, of their
information, on medical files. Many are still using loopholes by simply
sticking up notices in surgeries which they know will go unnoticed, or
that many users will not be able to deal with ,or be embarrassed to make
their wishes known. IT IS SHABBY AND UNETHICAL especially in those
practices where health workers are involved with research, are publishing
books using private information 'drawn from their experience in surgeries'
(ie other peoples experiences). Researchers such as A. Charles who are
keen to develop the partnership approach which is demanded by society now,
could be more proactive in encouraging practitioners to comply with
guidelines so that they can get on with their research. The attitude of
the public is not the sticking point here, most are only too willing to
participate - if treated openly, with respect and without having others
play power games with important aspects of their lives - it is unethical
for those in the advantaged position, by dint of the work they do, to
exploit the disadvantaged who largely have no choice but to divulge
personal information. Part of the work of a true ethicist should be to
inform and empower the disempowered.
There is the nub of the problem with the present BMJ Ethics
Committee. It is not clear how people have been appointed (rather than
elected). None excepting Peter Singer perhaps are unattached to the
medical profession in a way that they can attend to the ethical demands of
all sections of society, their own self interests compromise this
posibility. Incredibly in the present climate there are no Lay
representatives. This does not engender trust that such a committee can be
responsive to the cultural expectations of present society. The article
written by a member of the ethics committee last week seemed as much a
demonstration of the desire for increased control than than a genuine
attempt to reflect the wishes of all sections of society. Ethical
problems are complex and to some extent bound up with issues of power and
the values of society.
The BMJ needs a differently constituted Ethics committee. The
current Chair of BMJ Ethics committee, Iona Heath Co-Principal Caversham
Health Centre, (also Chair GPs Ethics committee) stated (in BMJ 17 Feb.
2001 'A Warning to the GMC) 'There is no question that lay people must be
involved in the regulation of the medical profession.....But how should
these people be selected.....'She has anxieties but admits of the need for
lay representation - It equally applies to the BMJ Ethics Committee and
the GP committee which she chairs. I am obviously qoting parts I find
relevant to my argument - (the whole article is available on-line) but
elsewhere in the piece Iona Heath states 'the GMC seems likely to becaome
smaller with a larger proportion of lay members, AND THE POTENTIAL FOR
POLITICAL PLACEMENT AND INFLUENCE WILL BE PROPORTIONATELY GREATER'. The
message could be taken on board equally to inform the way the BMJ Ethics
committee is run.
Competing interests:
Many years of work in the field of medical ethics
Competing interests: No competing interests
Informed consent
Obtaining informed consent from patient regarding case details or
image or photograph is a very difficult and vague issue.Frankly I don't
know what else to tell patient except that his photograph or case details
is being sent to a scientific journal for publication and if published
this may help other people to learn from my experience in helping other
similar patients.I can't tell patient whether his details will get
published because I don't know that.Patients mostly are unaware of the
nature and type of medical journal.They can't tell difference between BMJ
or JAMA or New England Medical Journal.Most of the time they haven't even
heared the name of the Journal,its place of publication and its
circulation.They don't know how much impact will it have once his details
are published.I don't know about any financial implication for
publication.I can't tell whether publication of details will distress the
patient.In fact I found that patients like the idea that thier case gets
noticed.There is not enough information regarding patient's informed
consent and I believe other also face similar situation.
For us practically it becomes a ritual where patient signs on the
dotted line because we ask trhem to do so!
Competing interests:
None declared
Competing interests: No competing interests