Consent and Photography

Abstract

Informed consent is essential to ensuring a trauma-informed, survivor-centered, ethical process that respects the (developing) autonomy of a patient.

1 Informed Consent

Informed consent is essential to ensure a trauma-informed, survivor-centered, ethical process that respects the (developing) autonomy of a patient.

If a patient does not (yet) have the developmental capacity to provide their own informed consent (i.e., is not sufficiently autonomous in the relevant sense), but is able to understand the basic ideas about what is being proposed, they should be involved in the decision-making process as much as possible and their “assent” should be obtained, along with the proxy consent of their parents or caretaker(s) (also known as parental permission). It is especially important to engage the patient and/or parents/caretaker(s) in an informed consent process when taking clinical or forensic photographs of sensitive body parts such as the genitalia. Even when informed consent is given by a parent or legal guardian, the clinician should obtain assent from the patient herself throughout the encounter.

Informed consent and assent apply to interviewing, carrying out a medical examination, taking photographs of the physical findings, and the dissemination of information and photos obtained at the visit to third parties (police, legal system, photo atlas, medical books, articles, or case reports).

• You must gather informed assent/consent and confirm the patient is still in agreement, before handling the camera in front of the patient and taking photographs.

• You must ensure that the patient fully understands the benefits and risks of photo-taking or any other action before they sign the consent form.

• A patient (or a legal guardian in the case of a minor) has the right to refuse any action, at any time, even if he or she has previously consented to the actions. Make sure that the patient understands that refusing to be photographed will not affect their access to medical care or the legal process.

• If you plan on taking photographs while the patient is under anesthesia, informed consent must be obtained before the patient is sedated.

• You must explain that genital photographs will be used for medical education purposes and may be seen by many health professionals. As such, they are not going to be strictly confidential, though you will make sure no identifying information will be included.

2 Trauma-Informed Care

It is critical to take a trauma-informed approach to the history, physical examination, and photography of individuals with FGM/C. Trauma-informed care is an approach that assumes the person in front of you may have experienced trauma. Its principles emphasize establishing trust, ensuring safety, and yielding control to the patient, while striving to minimize discomfort, potential re-traumatization, and shame. This is particularly important in the context of performing a genital examination and photographing the genitalia of a child, which may elicit strong emotional reactions. A critical part of creating a safe environment for the patient is to clearly describe the purpose of the evaluation and photography, provide a concrete description of each step of the encounter, and reassure the child that she may pause or even stop the evaluation/photography at any time.

Photography is not the essential component of the exam and no pressure should be exerted on the patient or the family [47,48,49,50,51,52].

3 Photography: Technical Tips

• Lighting can be critical to the appearance of some injuries/lesions. Bring in natural light if possible; if not, make sure the light source is not directly aimed at the lesion/area you want to photograph. The presence of bright lights or reflective surfaces can produce a washout of the detail (overexposure) and the injury or lesion will become less visible.

• Darker skin reflects more light which can lead to overexposure. Often automatic settings on cameras do not account for this. Manual adjustment for flash and exposure may be needed.

• Angled lighting reveals a higher level of detail than frontal lighting. A light source aimed at 45° angle to the lesion is considered the closest to natural lighting.

• Consider using a ruler, or some other object of standard size (like a coin) to show the size of the anatomy or scars and to provide a scale of reference.

• Take three photographs: a close-up, a medium-distance photo, and another showing the relationship to the rest of the perineum/genitalia/vulva.

• If you are using a phone or tablet to take pictures, always use horizontal shooting.

• Stabilize the device by holding it with both hands. You may need to have a nursing assistant help with the separation of the labia to allow for a full view of the area you wish to photograph. In some cases, it is ok to ask the patient if she is willing to assist.

• Regularly clean the screen and lens BEFORE taking photographs.

• Once the photographs have been taken and transmitted to an appropriate/secure source, DELETE them from your phone, tablet, or camera.

Appendix: Standardized Form Used at University College London Hospitals as an Example [10]

Date of Appointment________________

Child’s Personal Details:

Name: ________________

Hospital Number:…………………NHS Number:…………………..

Date of Birth…………………

Who is present at appointment

UCLH Clinical staff present at appointment (please circle):

Other UCLH staff (specify names)………………………………………………

Other professionals present at appointment (give name)

Social Worker ________________

Police ____________________

Interpreter __________________

Advocate ____________________

Other _______________________

Child accompanied by (give name):

Parent ______________

Foster Carer ___________

Sibling ______________

Other ________________

Details of Referral:

Child referred by………………………………………………………..………..

Date FGM concern first raised and by whom………………………………....…

Date of referral letter……….......…………………………………….………….

Date of appointment at UCLH…………………………………………...………

Reason for Referral:

 FGM already confirmed on examination in child………….................……….

 History of FGM given by child…………………………………….............….

 History of FGM in child given by parent

 Family member of index case…………………………………................…....

 Child may be at risk of FGM……………………………………….................

 Other (specify)…………………………………………………………...........

FGM History; Taken from (please circle)

Child Parent Police Social Worker

Other (specify)……………………………………………….

Describe concerns and why referral requested

…………………………………………………………………...………………

……………………………………………………………………...……………

……………………………………………………………………….......………

……………………………………………………………………………...……

Child Medical History

(History taken from…….)

Country of birth   Date of entry to UK

Ethnicity………………  Religion……………………..

Birth history including weight……………………………………….

Development………………………………………………………….

Special Needs……………..

General medical history:

Past medical history

 Operations………………………………………………………..

 Medications………………………………………………………

Previous genital operations (including labiaplasty) Yes/No

 If yes, specify………………..

Genital Piercings Yes/No

 If yes, specify

Immunisations………………… Allergies………………………………

Systems review (Circle symptoms)

Urinary symptoms Yes/No

 Frequency

 Bed wetting

 Daytime Incontinence

 Recurrent urinary infections

Vulval/vaginal

 Vulval irritation (including nappy rash)

 Vaginal discharge

 Vaginal bleeding (not menstruation)

 Vaginal pain

Gastrointestinal symptoms

 Constipation

 Diarrhoea

 Abdominal pain

Gynaecological history

 Periods Yes/No

 Menarche

 Tampons Yes/No

 Sexually active Yes/No/Unknown

 Contraception……………………………………

 Previous pregnancies…………………………

Child Mental Health History

Under CAMHs Yes/No

If yes—specify why………………

Symptoms (circle)

 Poor appetite

 Poor sleep

 Flashbacks/nightmares

 Self harm

 Suicide attempts

 Mood changes

 Drugs/Alcohol

 Other……………………………….

History of alleged FGM: Parents Deny

Parents Deny FGM  Yes No

Age of FGM………………..

Country…………………….

Where (circle)

 clinic/hospital/home/religious place

 other ………………………………

Who by

 Doctor

 Nurse/midwife

 Other health professional

 Traditional practitioner

 Other

Who organised is (specify)…………………….

Index child alone or group procedures…………………………….

If group, who else……………………………………………………..

Anaesthetic……………………………………………..

Antiseptic (cleaning)…………………………………..

Antibiotics……………………………………………….

How performed?

 Knife/scissors/other

Does the child remember it? Yes/No

Complications after

 Pain/Bleeding/Infection

 Other …………………………

Family History of FGM

Mother Yes/No

Siblings Yes/No If yes, specify………….

Maternal Grandmother Yes/No

Paternal Grandmother Yes/No

Other family members, specify…………..

Family

Address

Phone number

Family composition…………………………………………….

Parents	Name	Age	Occupation	Country of birth	Year entered UK
Birth Mother
Birth Father
Other adult at same address
Children at same address

Previous Child Protection Concerns Yes/No

If yes, specify……………………………………………………………………

Family Medical History

Significant medical condition……………………..

Drugs/alcohol………………………………………

Significant mental health condition………………

Domestic Violence…………………………………

Medical Examination

Clinicians present

Others present………………………………………………..

Consent given for DVD recording  Yes/No

Interaction of child with carer………………………….

Demeanour of child……………………………………….

Clothes………………………………………………………..

Hygiene……………………………………………………………

Position for genital examination…………………………………….

General Examination

Cardiovascular……………………………………

Respiratory…………………………………………

Abdominal………………………………………….

Skin (e.g. scars)………………………………………

Puberty Stage……………………………………….

Other significant findings…………………………..

Genital Examination

Clitoris

 Present/absent

  Glans clitoris Present/absent Can’t tell

  Body of clitoris Present/absent Can’t tell

  Clitoral hood  Present/absent Can’t tell

 Scarring Yes/no

  If clitoris scarred, describe………………………………………

Inner Labia

 Present/absent

 Normal/abnormal

 Symmetrical/asymmetrical

 Scarring Yes/No

  If inner labia scarred, describe……………………………………..

Outer Labia

 Present/absent

 Normal/abnormal

 Symmetrical/asymmetrical

 Scarring Yes/No

  If outer labia scarred, describe……………………………………..

Vaginal Introitus

 Normal/abnormal

  If abnormal, describe…………………………………………………

Other findings

 Piercing

 Scarring

Physical evidence of FGM Yes/No

 If yes Type of FGM………………..

Forensic Samples Taken  Yes/No

Testing for BBV   Yes/No

Diagram of Findings

Management Summary

FGM confirmed on from clinical history  Yes/No

FGM confirmed on physical examination  Yes/No

Investigations;

 BBV   Yes/No

 Other (specify)……………….

Clinical Judgement

 FGM Yes/No

 Type of FGM……………………………

If FGM Confirmed

Action	Date	Who to do
1. Social services referral
2. Mandatory reporting to police
3. Completion of DH enhanced dataset
4. Medical report dictated
5. Referral to another health professional
6. Copied to police because of criminal investigation

Medical or Surgical Complications requiring referral Yes/No

If yes, specify…………………………………..

If yes, who referred to…………………………….

Discharged from FGM Clinic Yes/No