Tuesday, 13 August 2013

Medical Photography: Ethics, Consent and the Intersex Patient

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Clinical perspectives

There is a wide range of intersex conditions; some such patients will have genitalia that are considered ambiguous, i.e. neither clearly male nor clearly female. Other intersex patients will have unambiguous genitalia but a karyotype will show that they have an unexpected sex chromosome pattern for their phenotype, e.g. a 46XY female or 46XX male. The incidence of intersex conditions is unknown, but estimates suggest that 0.1–2% of people may have an intersex condition.

Intersex conditions are rarely discussed in the general population and the individuals concerned often experience significant psychological distress, facing great stigma and isolation. Within our intersex services and from feedback via the Androgen Insensitivity Support Group, we have learnt that many adult intersexuals report sometimes feeling ‘like a freak’ and having low self-esteem. Intersex adults see many factors as vital in reinforcing these negative feelings. These include genital surgery with repeated vaginal examinations throughout childhood and adolescence, clinical photography, being exhibited to many trainee doctors and medical students, and confusion caused by limited or inconsistent information about their actual diagnosis.

In women with unambiguous genitalia and a 46XY karyotype, e.g. complete androgen insensitivity (CAIS), previously called testicular feminization, there are usually no clinical signs in childhood. These patients have normal female external genitalia, with a shortened vagina, internal testes and no uterus. As these girls pass through puberty they develop normal secondary sexual characteristics, except for a reduced amount of pubic and axillary hair and primary amenorrhoea. Childhood clinical photography in these patients will show a normal healthy girl. The ethics of clinical photography in these cases are debatable and the process of having the photograph taken, along with its subsequent use, may be extremely traumatic and restrict adjustment to their condition. That they have what is considered a ‘rare and intriguing’ medical condition is no justification to photograph the patient.

“I have always been shocked at there being such a photo in my records and can see no reason for this photo, other than as some kind of “freak show” for other medical professionals. I have always thought the photo should have carried the caption of what the doctors were obviously thinking when they took it, i.e. ‘Have you ever seen a genetic male looking so female?’ I think the particular expression on my face speaks volumes and I was obviously traumatized by it” (Fig. 1).

Figure 1. This picture 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.

Unlike CAIS, other intersex conditions may cause the birth of children with ambiguity of the genitals or developing ambiguous genitals in puberty. In these cases there are valid clinical signs, and clinical photography may have an important role both in recording information for the patient's medical records and for educational purposes. However, the effects of photography 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 carefully evaluated.




Psychological impact of photography on the patient

“They made me be naked in a room and take pictures of me and they took pieces of my skin and left two marks one on each arm and nobody said to me why they were doing it. Those marks are still there, and I look at them and I think “Why did they do that?” You know, why did they make me stand in a room and have pictures taken with no clothes on and humiliate me like that without saying anything to me. Why, what was wrong with me?” A 53-year-old-with CAIS.

When this patient talked about having had clinical photographs taken in her early teens she had tears in her eyes and she was angry. She has skin biopsy scars to remind her of the experience that she has been trying to make sense of in the intervening 30 years. The patient asked these questions with imploring urgency. She knows that she has a rare genetic syndrome and suspects that doctors wanted to photograph the stigmata of her condition. In essence, she knows exactly what was ‘wrong’ with her. What she still finds impossible to reconcile is why she was treated in this way and was made, or was allowed, to feel the way she did.

“I was shocked when I saw it (the picture)- not as shocked as my mom was, though! But we got through it. My mom was holding me when he took the pix, but had no idea he would publish them. She thought he was just taking pictures of me. I kind of like my little picture! I've made a little peace with that tiny child with the sad eyes.” (Fig. 2).

Figure 2. This picture was found by a 40-year-old with CAIS, whilst searching for medical information about her condition.


The experience of being photographed has exemplified for many people with intersex conditions the powerlessness and humiliation felt during medical investigations and interventions. The lack of consent sought or information given during treatment is often typified by the memory of standing naked against a wall and holding a position for the camera. Similarly, when people search medical texts to look for answers about themselves, they see photographs of themselves or others, learn the clinical facts about their condition, and can at once be taken back to the emotional environment of personal confusion, parental worry and clinician's anxiety. Identification with the pain and distress captured by the photograph means that the affected people feel it afresh.

The question posed by people who have had this experience is; ‘How bad am I that someone can make me feel like that’? This interpretation of the experience of clinical photography is personal and complex. The patient is encouraged to expose the parts of her that she has been told are aberrant. These are documented and presented as her defining features. Despite respectful and caring treatment at other times, there is a risk that the photography process will be perceived as representing the genuine position of the clinician. The patient assumes that her painful emotional responses are known and accepted by the clinician. This leads her to conclude that she must be worth little.


Conclusion

Obtaining images of patients without fully informed consent is unethical and may have serious consequences. All clinical images should be taken after full consent has been obtained and should be maintained in a secure regulated environment to protect patient confidentiality. Whilst intersex patients have specific and unique needs, the principles of minimizing psychological distress from clinical photography apply equally to all patients regardless of their condition.

In intersex patients, undergoing clinical photography causes unnecessary distress and suffering. It can compromise the relationship between patient and doctor and can lead to long-term psychological trauma. Careful consideration should be given to every image request before fully informed consent is obtained, and to minimize the psychological distress all images, where possible, should be obtained whilst under anaesthetic for surgical treatment or investigation. Full-body views of naked intersex patients contravene all the duties of care of doctors, and should neither be taken nor used for education or publication.

To summarize:
  • •  A proportion of medical photography is for publication and presentation and is not essential to the care of any individual patient.
  • •  Medical photography may have significant effects on the patient and their family. This is particularly true of intersex conditions but is likely to apply to other patients.
  • •  Patients undergoing medical photography must be fully informed as to the purpose of the photograph and full consent for each use must be sought.
  • •  Pictures taken by other than photographic staff should be subject to the same storage and use regulations as those taken by the professional photographic staff.
  • •  Photographs of the genitalia and other sensitive areas in children and intersex patients should where possible be taken at the time of general anaesthetic for treatment or investigation.
  • •  Whole-body naked photographs of children or adults with intersex disorders cause serious psychological sequelae and should not be taken. They do not educate or inform and should no longer be used for teaching and publication.
  • •  Further objective work on the long-term influence of medical photography on patients is required.

Source / Full Text: Wiley Online Library - BJU International Volume 89, Issue 1, pages 67–71, January 2002 [S. Creighton, J. Alderson, S. Brown, C.L. Minto]

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