Your Rights as a Trial Participant
You have important rights protected by UK law. Here is what you need to know.
Right to informed consent
You must be given all the information about a trial - what it involves, the risks, and the benefits - before you decide to take part. You sign a consent form to say you understand and agree.
Right to withdraw at any time
You can leave a clinical trial at any time, for any reason, without it affecting your normal NHS care. You do not need to give a reason.
Right to know all risks
Before you enrol, the research team must explain all known risks and possible side effects. If new risks are discovered during the trial, you must be told.
Right to your data
You have the right to know what data is being collected about you, how it will be used, and who will see it. You can request a copy of your data at any time.
Right to continue standard care
If you leave a trial, you have the right to continue receiving the best available standard treatment on the NHS. Your care will not suffer.
Right to compensation
If you are harmed as a result of taking part in a trial, you may be entitled to compensation. The trial sponsor is required to have insurance for this.
Independent ethics committee approval
Before any clinical trial can start in the UK, it must be reviewed and approved by an independent research ethics committee. This is a group of people - including members of the public, doctors, and ethicists - who review the trial to make sure participants are protected.
They check that the trial is scientifically sound, that the risks are reasonable, and that the information given to participants is clear and honest. If they are not satisfied, the trial cannot go ahead.
Your data protection rights (UK GDPR)
- • Your personal data is protected by the UK General Data Protection Regulation (GDPR) and the Data Protection Act 2018.
- • Trial data is anonymised before being shared with other researchers.
- • You can ask what data is held about you and request corrections.
- • Your data cannot be sold to third parties.
- • You can complain to the Information Commissioner's Office (ICO) if you think your data has been misused.
Your Rights at a Glance
Print this card and keep it with you.
- Right to informed consent: You must be given all the information about a trial - what it involves, the risks, and the benefits - before you decide to take part.
- Right to withdraw at any time: You can leave a clinical trial at any time, for any reason, without it affecting your normal NHS care.
- Right to know all risks: Before you enrol, the research team must explain all known risks and possible side effects.
- Right to your data: You have the right to know what data is being collected about you, how it will be used, and who will see it.
- Right to continue standard care: If you leave a trial, you have the right to continue receiving the best available standard treatment on the NHS.
- Right to compensation: If you are harmed as a result of taking part in a trial, you may be entitled to compensation.
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