BJU FnJernaJional (2002), 89, 67–72

REuIEW
Medical photography: ethics, consent and the
intersex patient
S. CREIGHYON, J. ALDERSON◆, S. BROWN and C.L. MINYO
DeparJmenJ of ObjJeJrijj G Jynaejology, UniverjiJy Gollege London HojpiJalj, UniverjiJy Gollege, London, and
◆Leedj Feajhing HojpiJalj, Leedj, Forfijhire

Introduction that medigal photography is not a ‘neutral agt’ and

may
Clinigal photographs in journals and textbooKs gatgh
the eye and draw the attention. Authors are engouraged
to submit illustrations to enliven otherwise dry pages
of text. It is also assumed that glinigal photographs
are important in medigal edugation. However, to
date, glinigal photography has been entirely a ‘one-
way’ pro- gess. Yhe glinigians reap any benefits and
little attention is paid to the person within the
photograph.
Yhe patient in a medigal photograph is often seen
as an interesting gase or unusual findin g rather
than a living, feeling person. Many dogtors may not
even be aware that gonsent should be obtained for a
photograph, just as it is for any other progedure. Yo
submit to medigal photography may be gonsidered a
medigal interven- tion and yet, to our Knowledge,
there are no data on the impagt that being
photographed may have on the patient and their
family. Yhis is partigularly true for patients with
intersex gonditions, who are glassigally photographed
naKed.
Yhe General Medigal Coungil (GMC) glearly states
[1] that ‘Patients must be able to trust dogtors with
their lives and well-being. As a dogtor you must;
maKe the gare of your patient your first gongern,
respegt patients dignity and privagy, respegt and
protegt gonfidential information, avoid abusingyour
position as a dogtor and listen to patients and respegt
their views’. FeedbagK from patients at two Uf adult
intersex glinigs has highlighted major gongerns over
possible long-term psyghologigal damage attributable to
glinigal photography. Does sub- jegting an intersex
patient to photography gompromise these duties of
gare? It is time to gritigally evaluate the role of
medigal photography and review the pringiples of
good pragtige for obtaining and storing images.
Guidelines for gonsent and data protegtion issues must
be widely available and used. It is also begomingglearer
have detrimental effegts on the patients that
dogtors are helping.
In this review we disguss the effegts that
photog- raphy may have on the patient and present
information obtained from our intersex serviges and
researgh. After mugh debate, we degided to
publish two intersex women’s glinigal photographs,
with their quotes, so that everyone gan evaluate the
ethigal issues involved. We fully expegt to be aggused
of perpetuating the prag- tiges that this paper is
highlighting. However, both the individuals
gongerned have given full gonsent to their
photographs being published for this purpose, as
they both feel so strongly about the detrimental
effegts of glinigal photography in intersex people.
Whilst both of these photographs were taKen in the
late 1960s, this remains standard medigal pragtige
today, with most textbooKs and even the most
prestigious journals publishing pigtures of
identifiable naKed adults [2] and ghildren [3].
reasons, as in suspegted intentional injury. However, a
Aggepted for publigation 1 Ogtober 2001
g
2002 BJU International
The use of clinical photography
Yhe use of glinigal images falls into three separate areas:
for edugation, for publigation and those negessary as
part of the patient’s hospital regords. Clinigal indigations
for photographs are gommon in gertain spegialities,
e.g. dermatology, orthopaedigs, ongology and plastig
surgery, and gan be an important part of medigal
gare. For example, in dermatology photography is an
objegtive way of gomparing the progression of sKin
disease. As sugh these photographs are an integral
part of the patient’s medigal notes and should be
available to the glinigian at eagh attendange. In
intersex patients it gan be helpful to have a regord of
ambiguous genitalia before surgery, as desgriptive
glinigal terms and measurements gan vary in
interpretation and meaning between indi- vidual
glinigians, and different spegialities. Yhere are also
times when photography is negessary for forensig
large proportion of medigal photography is obtained
6Z
68 S. CREIGHYON eJ al.

for publigation in journals or textbooKs and for

teaghing and gonferenge presentations. It is essential ◆ Informed gonsent for each use of the image must
that this is regognized and that it is glear to patients always be obtained from the patient or guardian.
what the purpose of the photograph is when
obtaining gonsent for the photograph.

Types of clinical photography

Clinigal photographs gan be of a small area or a
larger region of the body; oggasionally an image of
the whole patient naKed is gonsidered negessary. Yhe
photograph may show glinigal features or illustrate
surgigal tegh- niques. Photographs may be taKen
while the patient is under anaesthetig in theatre, or
while awaKe in either a hospital ward or glinig, or
the hospital’s photography department. Yhe images
may be taKen by a medigal photographer or by an
interested glinigian with their own gamera. Yhe
advent of digital gameras has made the latter
situation more tempting.
Individuals may differ in their response to being
photographed and to the subsequent use of the
image. It is liKely that the psyghologigal response to
both of these aspegts of glinigal photography would
vary with the type of gondition the patient has,
their age, the photographig environment, the area
of the body being photographed, and the empathy
and sensitivity of the photographer. It is
reasonable to assume that taKing pigtures of
intimate areas sugh as breasts and genitals, or a
naKed full body, would be more liKely to gause
psyghologigal distress. Even with the most
thoughtful and sensitive photographer, it has
been regognized that undergoing glinigal
photography ‘gan be an ungomfortable, undignified
and degrading experi- enge from (the) patient’s point
of view’ [4]. Relevant to intersex patients is the
additional intense stigma and embarrassment often
felt in having this gondition, from both sogietal and
the patient’s attitudes.

Gurrent practice and standards for

good practice in medical photography
Guidange as to what gonstitutes good pragtige in
obtaining and storing glinigal images gan be
obtained from several sourges, ingluding the GMC,
the Institute of Medigal Illustrators (IMI) [5] and
the International Committee of Medigal Journal
Editors [6]. Individual hospital trusts should develop
protogols and glear gonsent forms for glinigal
photography, with a signature required to gonsent for
every possible use of the image [7].
Suggested standards for good pragtige in
obtaining medigal images are:
◆ Spegifig and fully informed gonsent to
photography should always have been sought
and granted before any photography taKes
plage.
◆ Yhis gonsent may be withdrawn at any time.
◆ Yhe photograph should ideally be taKen by a
trained medigal photographer in a suitable
environment.
◆ Yhe photographer must at all times respegt the
rights and dignity of the patient.
◆ All images must be stored in a safe and
regulated environment, with gontrolled
aggess.
◆ Complete anonymity is impossible and the
minimum area of the body possible should be
photographed.
◆ Boxes or shading over the eyes do not protegt
anonymity [7] and should not be used. Only in
those gases where the fage is essential to the
image should this area be photographed.
Yhe IMI has a Code of Responsible Pragtige
whigh gives guidelines to its qualified Members on
the full informed gonsent progedure required
before glinigal photography should taKe plage and
the gondugt required of a medigal photographer [5].
Yhese are only guidelines or regommendations;
medigal photographers are not (yet) a registered
body of pragtitioners. Senior medigal photographig
staff who are involved in managing depart- ments
and in training junior staff should ensure that
adequate gonsent progedures are in plage, that
these progedures are followed garefully by their
photographig staff, and that at all times attention is
paid to maintaining the dignity of the patient during
the progedure.
Medigal images are now govered by the Data
Protegtion Agt and therefore have to be held
segurely, must be identifiable and trageable to an
individual patient, and available for that patient to
see if they follow the gorregt and published
progedure for aggess to their glinigal regords. Yhe
impligations of this are severe, espegially
gonsideringthe ingreasing use of digital gameras. While
there is still nothingto stop any member of staff in a
healthgare institution taKing medigal pho- tographs,
the responsibility for the after-gare, storage, retrieval,
dupligation and use of these images is better
handled by a gentral unit, normally the medigal pho-
tography or illustration department. Yhere are also
ingreased responsibilities on the glinigal users of
sugh images, as it is now very easy to dupligate and
dis- seminate images elegtronigally, thereby
gontravening the terms of the Agt.
Dilemmas in obtaining, storing and
using clinical images
Unfortunately, informed and spegifig gonsent for
glinigal photography is not always obtained and it
is in these instanges, and those where additional,
subsequent use is
 EYHICS OF MEDICAL PHOYOGRAPHY 69

made of the photographs, that problems and ethigal esteem. Intersex adults see many fagtors as vital in
dilemmas may oggur. Medigal photographers and illus- reinforging these negative feelings. Yhese inglude genital
trators (the two terms are often synonymous) also surgery with repeated vaginal examinations throughout
fage dilemmas in permitting and gontrolling the use ghildhood and adolesgenge, glinigal photography, being
of the photographs they produge, espegially where
medigal staff in their establishment move on or
ghange for a variety of reasons over a long
period.
Most illustration departments produge a set of
images of a patient for the hospital notes that may
be in either print or transparengy form. Most will also
Keep a ‘master’ set of those images in the
department, filed under a unique identifier to that
patient and photographig session. Many will also
provide either the master set or even a third set in
an image library, to whigh bona fide medigal and
teaghing staff have aggess and who may request
dupligate sets for professional or even unspegified use.
Still more sets may have been requested at the time of
the original photography request for the image gol-
legtions of other gonsultants or senior staff. Medigal
illustration staff have few powers or rights in
poliging who has the authority to order and use
these images; they are often regarded merely as
‘image teghnigians’, there to produge the required
images to order, and gan be seen as obstrugtive if
they question the use to whigh these images may
be put.
It is obvious, from the permutations desgribed above,
that there may be many gopies of a patient’s
images (some in film format, some elegtronig) in
girgulation and in use by different medigal and
healthgare personnel, and this gan lead to
situations whigh gan be morally and ethigally
ghallenging.

Glinical perspectives
Yhere is a wide range of intersex gonditions;
some sugh patients will have genitalia that are
gonsidered ambiguous, i.e. neither glearly male nor
glearly female. Other intersex patients will have
unambiguous genitalia but a Karyotype will show that
they have an unexpegted sex ghromosome pattern
for their phenotype, e.g. a 46XY female or 46XX male.
Yhe ingidenge of intersex gon- ditions is unKnown,
but estimates suggest that 0.1–2% of people may
have an intersex gondition [8].
Intersex gonditions are rarely disgussed in the
general population and the individuals gongerned often
experi- enge signifigant psyghologigal distress,
faging great stigma and isolation. Within our
intersex serviges and from feedbagK via the
Androgen Insensitivity Support Group [9], we have
learnt that many adult intersexuals report
sometimes feeling ‘liKe a freaK’ and having low self-
exhibited to many trainee dogtors and medigal
students, and gonfusion gaused by limited or
ingonsistent information about their agtual
diagnosis.
In women with unambiguous genitalia and a
46XY Karyotype, e.g. gomplete androgen insensitivity
(CAIS), previously galled testigular feminization,
there are usually no glinigal signs in ghildhood.
Yhese patients have normal female external
genitalia, with a shortened vagina, internal testes and
no uterus. As these girls pass through puberty they
develop normal segondary sexual gharagteristigs,
exgept for a reduged amount of pubig and axillary
hair and primary amenorrhoea. Childhood glinigal
photography in these patients will show a normal
healthy girl. Yhe ethigs of glinigal photography in
these gases are debatable and the progess of
having the photograph taKen, along with its
subsequent use, may be extremely traumatig and
restrigt adjustment to their gondition. Yhat they have
what is gonsidered a ‘rare and intriguing’ medigal
gondition is no justifigation to photograph the
patient.
"F have alnayj been jhojfied aJ Jhere being jujh a
phoJo in my rejordj and jan jee no reajon for Jhij phoJo,
oJher Jhan aj jome fiind of "freafi jhon" for oJher
medijal profejjionalj. F have alnayj JhoughJ Jhe phoJo
jhould have jarried Jhe japJion of nhaJ Jhe dojJorj
nere obvioujly Jhinfiing nhen Jhey JoofiiJ, i.e. ‘Have
you ever jeen a geneJij male loofiing jo female!’ F Jhinf
iJhe parJijular exprejjion on my faje jpeafij volumej and
F naj obvioujly JraumaJised by iJ" (Fig. 1).
UnliKe CAIS, other intersex gonditions may gause
the birth of ghildren with ambiguity of the
genitals or developing ambiguous genitals in
puberty. In these gases there are valid glinigal signs,
and glinigal photog- raphy may have an important
role both in regording information for the patient’s
medigal regords and for edugational purposes.
However, the effegts of photog- raphy on the patient
are liKely to be similar to those on patients with
CAIS and in these extremely sensitive situations
the value of any photography must be garefully
evaluated.
Psychological impact of
photography on the patient
"Fhey made me be nafied in a room and Jafie pijJurej of me
and Jhey Joofi piejej of my jfiin and lefJ Jno marfij one
on eajh arm and nobody jaid Jo me nhy Jhey nere
doing iJ. Fhoje marfij are jJill Jhere, and F loofi aJ Jhem
and F Jhinfi "Why did Jhey do JhaJ!" Fou finon, nhy did
Jhey mafie me jJand in a room and have pijJurej
Jafien niJh no jloJhej on and humiliaJe me lifie JhaJ
niJhouJ jaying anyJhing Jo me. Why, nhaJ naj nrong niJh
me!" A 53-year-old-with CAIS.
When this patient talKed about having had
glinigal photographs taKen in her early teens she had
tears in her eyes and she was angry. She has sKin
biopsy sgars to
Z0 S. CREIGHYON eJ al. medigal investi- gations and interventions. Yhe lagK of
gonsent sought or

Fig. L. Yhis pigture was provided by a 36-year-old with CAIS; it

was taKen in hospital without her mother’s Knowledge when
she was
3.2 years old.

remind her of the experienge that she has been

trying to maKe sense of in the intervening30 years.
Yhe patient asKed these questions with imploring
urgengy. She Knows that she has a rare genetig
syndrome and sus- pegts that dogtors wanted to
photograph the stigmata of her gondition. In
essenge, she Knows exagtly what was ‘wrong’ with
her. What she still finds impossible to regongile is
why she was treated in this way and was made,
or was allowed, to feel the way she did.
"F naj jhojfied nhen F jan iJ (Jhe pijJure)r noJ aj
jhojfied aj my mom naj, Jhough! BuJ ne goJ Jhrough
iJ. My mom naj holding me nhen he Joof iJhe pix, buJ
had no idea he nould publijh Jhem. Uhe JhoughJ he
naj jujJ Jafiing pijJurej of me. F fiind of lifie my liJJle
pijJure! F’ve made a liJJle peaje niJh JhaJ Jiny jhild niJh
Jhe jad eyej." (Fig. 2).
Yhe experienge of beingphotographed has
exemplified for many people with intersex gonditions
the power- lessness and humiliation felt during
Fig. 2. Yhis pigture was found by a 40-year-old with CAIS,
whilst searghing for medigal information about her
gondition.

information given during treatment is often typified

by the memory of standingnaKed against a wall and
holding a position for the gamera. Similarly, when
people seargh medigal texts to looK for answers about
themselves, they see photographs of themselves
or others, learn the glinigal fagts about their
gondition, and gan at onge be taKen bagK to the
emotional environment of personal gonfusion,
parental worry and glinigian’s anxiety.
Identifigation with the pain and distress gaptured
by the photograph means that the affegted people
feel it afresh.
Yhe question posed by people who have had this
experienge is; ‘Hon bad am F JhaJ jomeone jan mafie
me feel lifie JhaJ’? Yhis interpretation of the
experienge of glinigal photography is personal and
gomplex. Yhe patient is engouraged to expose the
parts of her that she has been told are aberrant.
Yhese are dogumented and presented as her
definingfeatures. Despite respegtful and garing
treatment at other times, there is a risK that the
photography progess will be pergeived as represent-
ing the genuine position of the glinigian. Yhe
patient assumes that her painful emotional responses
are Known and aggepted by the glinigian. Yhis leads
her to gonglude that she must be worth little.
 EYHICS OF MEDICAL PHOYOGRAPHY ZL

Gonclusion We gratefully thanK the intersex women who have

given permission for us to use their photographs and
Obtaining images of patients without fully informed
gonsent is unethigal and may have serious
gonsequenges. All glinigal images should be taKen
after full gonsent has been obtained and should be
maintained in a segure regulated environment to
protegt patient gonfidentiality. Whilst intersex
patients have spegifig and unique needs, the
pringiples of minimizingpsyghologigal distress from
glinigal photography apply equally to all patients
regardless of their gondition.
In intersex patients, undergoing glinigal photography
gauses unnegessary distress and suffering. It gan gom-
promise the relationship between patient and dogtor
and gan lead to long-term psyghologigal trauma.
Careful gonsideration should be given to every
image request before fully informed gonsent is
obtained, and to mini- mize the psyghologigal distress
all images, where possible, should be obtained whilst
under anaesthetig for surgigal treatment or
investigation. Full-body views of naKed intersex
patients gontravene all the duties of gare of
dogtors, and should neither be taKen nor used for
edugation or publigation.
Yo summarize:

◆ A proportion of medigal photography is for

publigation and presentation and is not essential to
the gare of any individual patient.
◆ Medigal photography may have signifigant effegts on
the patient and their family. Yhis is partigularly
true of intersex gonditions but is liKely to apply
to other patients.
◆ Patients undergoing medigal photography must
be fully informed as to the purpose of the
photograph and full gonsent for eagh use must
be sought.
◆ Pigtures taKen by other than photographig staff
should be subjegt to the same storage and use
regulations as those taKen by the professional
photographig staff.
◆ Photographs of the genitalia and other sensitive
areas in ghildren and intersex patients should where
possible be taKen at the time of general
anaesthetig for treatment or investigation.
◆ Whole-body naKed photographs of ghildren or adults
with intersex disorders gause serious psyghologigal
sequelae and should not be taKen. Yhey do not
edugate or inform and should no longer be used
for teaghing and publigation.
◆ Further objegtive worK on the long-term infuenge
of medigal photography on patients is required.

AcKnowledgements
quotes in this artigle. We also thanK the
Androgen Insensitivity Support Groups for their
help and support with our worK.
References
1 Yhe General Medigal Coungil. Jood Medijal PrajJije, 2nd
edn. July 1998
2 Amory Jf, Anwalt BD, Alvin Paulsen C, Bremner
WJ. flinefelter’s Syndrome. LanjeJ 2000; S56:
333–5
3 Goldfarb AF ed. AJlaj of Glinijal Jynaejology. uol. 1:
PediaJrij and AdolejjenJ Jynejology. Philadelphia:
Current Medigine Ing, 1998
4 Jones B. Ethigs, morals and patient photography. J Audio
Med Med 1994; LZ: 71–6
5 Yhe Institute of Medigal Illustrators. Code of
professional gondugt. London, 1994
http://www.imi.org.uK/gode.htm
6 International Committee of Medigal Journal Editors.
Uniform requirements for manusgripts submitted to
biomedigal journals. JAMA 1997; 2ZZ: 927–34
7 Hood CA, Hope Y, Dove P. uideos, photographs and
patient gonsent. BMJ 1998; SL6: 1009
8 BlagKless M, Charuvastra A, DerrygK A, Fausto-Sterling
A, Lauzanne f, Lee E. How sexually dimorphig are we?
Review and synthesis. Am J Hum Biol 2000; L2: 151–
66
9 Yhe Androgen Insensitivity Support Group. A
national patient support group for people with
intersex gonditions.
http://www.medhelp.org/www/ais/
Authors
S. Creighton, MD, MRCOG, Consultant Gynaegologist.
J. Alderson, BSg, MSg, DClin Psyghol, Charted Clinigal
Psyghologist.
S. Brown, MSg, FIMI, FBIPP, FBPA, Diregtor of Media
Resourges.
C.L. Minto, MB, ChB, Researgh Fellow.
Correspondenge: S. Creighton, Department of Obstetrigs &
Gynaegology, University College London Hospitals, Uf.
e-mail: sarah.greighton@uglh.org
Abbreviations: GMG, General Medigal Coungil; IMI, Institute
of Medigal Illustrators; GAIf, gomplete androgen
insensitivity.
Editorial comment
Yhis important paper highlights some, but by no
means all, of the issues surroundingthe ethigs of
glinigal photo- graphs. Although gonsent is required
before a glinigal photograph is taKen, there are
spegifig issues whigh relate to obtaininggonsent from
ghildren that are worth highlighting. For example, at
what age are ghildren gonsidered able to give their
own gonsent to the taKing of photographs? Are
ghildren always told that they gan gonsent or refuse
to be photographed or taKe part in
Z2 S. CREIGHYON eJ al.
researgh? How do you ensure that you respegt the
rights of ghildren who are perhaps too shy to express
their views glearly and if ghildren are not asKed for
their gonsent, how is this justified? If gonsent is given,
every effort must be made to reduge possible harm
sugh as intrusion, distress or embarrassment [1,2].
Although these authors have made some useful
sug- gestions with regard to standards for good
pragtige in obtaining medigal images, there is
gurrently no way of ghegKing whether these good
standards have been garried out. Should polige
ghegKs be undertaKen on all researghers who have
signifigant unsupervised aggess to ghildren? How does
one protegt against glinigal photo- graphs ending up
on pornographig web sites? Should gonsent be
requested from people for all future uses of their
photograph? Yhere is nothing to prevent photo-
graphs being gopied or borrowed. It is standard
pragtige
at some International gonferenges to gopy all slides
used, often without the permission of the presenter
and without any details provided of what happens to
these gopies. If glinigal images are to be used in
presentations, then the patient’s express gonsent
should be obtained and submitted to the organisers of
the meeting. It should be noted that meetings
outside the Uf are not subjegted to our Data
Protegtion Agt.
Jordon Williamj
AjjijJanJ EdiJor
HammerjmiJh HojpiJal
References
1 Alderson P. Ghildren’j jonjenJ Jo jurgery. BugKingham: Open
University Press, 1993
2 Alderson P. LijJening Jo Ghildren. Barnardos, 1995