Informed consent
Can children and young people give truly informed consent to cross sex interventions?
What is informed consent?
The Cass Review raises concerns about whether young people can fully understand the long-term implications of medical treatments, such as exogenous hormones. The limited evidence for these interventions is highlighted by Cass as a barrier to being able to gain truly informed consent.
Informed consent in medicine refers to the process by which a patient voluntarily agrees to a proposed medical treatment or procedure after being fully informed of all relevant aspects. This ensures that the patient’s decision is made with a clear understanding of the potential benefits, risks, alternatives, and consequences.
What does the GMC say about consent?
You must give patients the information they want or need to make a decision.
This will usually include…
The potential benefits, risks of harm, uncertainties about and likelihood of success for each option, including the option to take no action. By ‘harm’ we mean any potential negative outcome, including a side effect or complication.
You should usually include the following information when discussing benefits and harms.
Recognised risks of harm that you believe anyone in the patient’s position would want to know…
The effect of the patient’s individual clinical circumstances on the probability of a benefit or harm occurring…
Risks of harm and potential benefits that the patient would consider significant for any reason…
Any risk of serious harm, however unlikely it is to occur…
Expected harms, including common side effects and what to do if they occur.
Can patients truly give informed consent to exogenous hormones?
Let’s imagine a consultation:
“Are you aware testosterone is used off licence?”
“Let me explain what off licence means. Before a medicine can be widely used in the UK, it must first be given a licence. While no medicine is completely safe, a licence means all the proper checks have been carried out and the benefits of a medicine is believed to outweigh the risks. The licence says what conditions the medicine has been approved for. In other words, testosterone has not undergone clinical trials in women in these doses to see if it is effective and safe.”
“What are your expectations from taking testosterone?”
“Do you understand that taking testosterone will not make you a man?”"
“It instead ‘virilises’ you: your voice will deepen, you will get more facial and body hair, your hairline may recede, and you may get acne.”
“You may gain weight.”
“You are 16 years old. Have you ever thought about having a family in the future? Most people at your age cannot imagine being a parent. However, testosterone may make it impossible for you to have children in the future. Do you understand this because this fact may be significant to you in the future when you meet a life partner?”
“It can increase your risk of heart disease. As a result, you may have a higher risk of dying at a younger age from a heart attack.”
“You are also at increased risk of cancer. Testosterone is known to cause your womb to thicken. Over time this could lead to cancer.”
“Testosterone can also thin the lining of your bladder and vagina. This can lead to you peeing when you cough or sneeze. It can make you need to pee more often and at times you may wet yourself if you cannot get to the toilet in time. We call this incontinence. It also increases the chance of you having urine infections.”
“Are you sexually active? Sex may become uncomfortable because your vagina is dry and can be damaged by testosterone.”
“Testosterone increases your risk of low mood, anxiety and irritability.”
“We think you will be likely to die younger than friends of the same age because your body ages faster.”
“You must also understand that many of the effects of testosterone will be irreversible. This means that if you were to stop taking it then the side effects we have discussed will never go away.”
“Have you heard of detransitioners? There are people who regret the decision they made to take testosterone, who stop taking it and must live with the effects it has had on them. It is important that you are aware this is a possibility in the future.”
Is current practice ethical?
All of these adverse effects mentioned above are in this report published recently from the US Department of Health and Human Services: Treatment for Pediatric Gender Dysphoria.
We are only scratching the surface of harms here, and many more are as yet unknown.
If a patient was fully informed regarding testosterone, would they consent to transition interventions? Surely a young patient would run out of the consultation room. We question the ethics of prescribing cross sex hormones in any patient, but it is without a doubt unethical to prescribe without explaining the risks in a way the patient can understand and weigh up to make a decision.
Can we be assured that patients are able to consent?
Can we be reassured that patients are able to give fully informed consent as stated by the GMC? At the very least a detailed consent form should be required for these life-altering interventions with every possible side effect and unwanted effect highlighted, and requiring the patient and parents’ initials before treatment starts. This is common practice in risky surgical operations.
This harmful flippancy in ‘transgender medicine’ must end. Our patients need to be safeguarded, and treated according to best care, not with interventions that harm. We conclude that patients cannot give informed consent to overwhelming harms.
Biology in Medicine
We at Biology in Medicine believe that children and young people should not have these interventions available to them, instead having access to excellent psychological care to accept the bodies they have, to be able care for themselves and to be able to grow up into healthy flourishing adults
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Excellent, clear piece on this issue. Thank you. I have restacked.
Absolutely, the emotional, social and psychological impacts are also huge. I recently read a group action has been commenced by one UK legal firm, surely informed consent will be a significant part of this case. GPs shouldn't prescribe CSH and if requested to stand in a court of law, saying the the gender identity clinic or the RCGP told me to, isn't going to cut it. GPs, protect your patients and yourselves!