Organ donation
With the announcement by the government of a move towards an opt-out system for deceased organ donation, and the launch of a consultation on the topic by the Department of Health (see below), organ donation has been high profile news over the past few months.
On that basis, here is a refresher on how organ donation currently works in the UK and the role of the HTA in regulating organ donation.
Living organ donation
Living organ donation is when a living person decides to donate an organ or part of an organ or to another person. As this donation happens while the donor is still living, the process is only possible with certain organs; most commonly a kidney. It is also possible to donate part of your liver called a liver lobe, which will then develop into a fully functioning liver for the recipient.
The HTA regulates the donation of organs in the UK from living people by making the decision on whether every donation can go ahead, based on criteria set out in law.
Living organ donation is a separate process from deceased organ donation and is not part of the consultation from the Department of Health.
Deceased organ donation
Deceased organ donation is the removal and use of organs or part organs from a deceased person for transplantation. The Department of Health consultation is about a change to this system from the current ‘opt-in’ to an ‘opt-out’ and more information about what this means is set out below. This is a useful opportunity for you to have your say.
How it currently works
England, Scotland and Northern Ireland
The current system is 'opt-in' in England, Scotland and Northern Ireland. The NHS Organ Donor Register (ODR) operates throughout the UK and allows you to record your decision about donating your organs. It allows you to say whether you wish to donate all of your organs and/or tissues, or some of your organs and/or tissues. It also allows you to opt out of organ and tissue donation entirely.
Following a public consultation, the Scottish Government announced their intention to bring forward legislation on a soft opt-out system of organ and tissue donation, as exists in Wales.
The Department of Health in Northern Ireland recently launched a 12-week consultation on a draft policy statement which sets out a new approach to promoting organ donation and transplantation.
Wales
An opt-out system for organ and tissue donation was introduced in December 2015 in Wales, as a result of the Human Transplantation (Wales) Act 2013.
This system created a new type of legal consent in Wales called deemed consent. This means that unless you registered or expressed a decision not to donate your organs after your death, you will be regarded as having no objection to donation. Your consent will be deemed to have been given, unless you fall into one of the exemptions or if your family and friends can show that you did not want to be a donor.
Who can donate?
Anyone can indicate their wish to donate by joining the Organ Donor Register (ODR). However, joining the ODR does not guarantee that any of your organs and/or tissue will be used after your death. Joining the ODR makes it clear that your wish is to donate your organs after your death, but for a number of reasons, this cannot always happen.
There are several factors that can affect if and how organs and tissues from someone registered on the ODR are used. For deceased organ donation to take place, the donor must have died under specific circumstances that constitute only a small proportion (around 1%) of deaths.
The possibility of donation taking place also depends on other factors, including the relevant medical professionals making decisions based on the suitability of the donor and the organs. Whatever your decision it is very important to share your wishes with your family.
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Consultation on introducing 'opt-out' consent for organ and tissue donation in England
The Department of Health have launched their public consultation on changing to an ‘opt-out’ system of organ donation, to improve organ donation rates in England. This system of organ donation means that unless a person has registered or expressed a decision not to donate their organs after their death, they will be regarded as having no objection to donation.
The consultation will be asking for comments on the proposed new system on areas such as:
- How much say should families have in their deceased relative's decision to donate their organs?
- When would exemptions to 'opt-out' be needed, and what safeguards will be necessary?
- How might a new system affect certain groups depending on age, disability, race or faith?
The consultation will run for twelve weeks concluding on 6 March 2018, after which a Government response will be published.
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Body donation featured on BBC Radio 4
The 'We Need to Talk About Death' programme on BBC Radio 4 recently ran an episode called 'Give My Body to Science', discussing what it means to leave your body to science and what options you have for doing so.
This episode features interviews with representatives from two of our licensed establishments, Kings College London and St. Georges, University of London.
If you are interested in donating your body, you can find information on our website.
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Your feedback on our guide to cord blood banking
Thanks to all of you who recently completed the feedback survey on our new guide for the public on cord blood banking.
We want to share the results of the survey with you, and explain how we plan to use your feedback in future.
Of all respondents to the survey, 12% of you had either banked cord blood or were considering doing so, additionally, 7% were considering giving the opportunity to donate as a gift. Others were professionals working in the field (31%) and the majority (50%) were people willing to give feedback for other reasons.
Of those considering cord blood banking, more of you considered public cord blood banking than private, but many were undecided and/or unaware of the difference.
As for the guide itself, most of you (90%) found it useful, with comments praising the guide as well-written, accessible and clear in its explanation of the various options available to those considering banking, though some wanted to see further clarification on certain points.
The guide was rated as being useful throughout, with no section particularly standing out, though some of you understandable found sections less useful which were not relevant to you, such as private cord blood banking. It was also suggested that we could include more on moral or religious views, more detail on the collection process and the effectiveness of stem cell treatments generally.
Onto the impact of the guide, 29% of you felt it informed or influenced your decision on cord blood banking. 47% felt it did not, though most of you explained that it was not a decision you were currently making. Several of you wished to see the guide introduced in the early stages of antenatal care, and seeing as 57% of relevant professionals said they had directed patients to the guide, this wish may increasingly be met.
 Your feedback is truly valuable to us in creating information for the public on important issues of our regulation. In this case, the guide was generally praised, with no particular areas of concern for us to address. As a result, we do not plan to update the guide in the near future but do plan to review it again at some point, as well as taking your feedback into all future information we produce. If you are interested in providing your valuable feedback to the HTA, on new information, ideas and other issues, and haven't already signed up, please join our public panel.
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Help improve how we engage with you
Could you spare five minutes of your time to help the HTA?
Complete our survey to help us improve how you communicate with us, and each other, on important HTA topics. No previous experience or knowledge required, we want to hear from all of you!
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Join our public panel
As a newsletter subscriber, we know the work of the HTA is important to you.
You can play a part in improving our work by joining our public panel. In doing so, you will have a say in helping us produce useful information for the public, so we can better inform people of the work we do to ensure that human tissue and organs are used safely, ethically, and with proper consent.
Taking part is easy
Sign up below, and when we're working on new material we will send it to you for feedback. This could be a guide to a new medical technique people are talking about, an update to our policies, or anything else we would like your opinion on. Recently, we collaborated with our public panel to create the public guides to our new Codes of Practice, described above.
We are not looking for experts, your honest feedback helps us to communicate clearly and share information that is easy to find and understand. There's no obligation, you can choose when you'd like to give your feedback.
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