Marina Yannakoudakis: Shared donor registries can avoid unnecessary deaths
Marina Yannakoudakis MEP discusses how sharing best practice in the EU can help boost donor registries and save lives.
A shortage of certain tissues and cells is currently affecting the EU. Almost half of EU Member States admit that they regularly face scarcities of human tissues and cells, particularly spinal marrow, gametes and tissues such as cornea and skin. In the European Parliament, I drafted a series of proposals which I hope will make it easier to find matches across Europe and save lives. The report was overwhelmingly approved by the parliament earlier this month.
I spend a great deal of time in the European Parliament fighting intrusive EU legislation, but I firmly believe that sharing best practice in the field of donation and donor registries is an area where the EU can truly be said to offer added value.
My proposals focused on increasing donations, raising awareness and increasing transparency.
Of course one of the ways to increase donations would be to pay donors. In the United States donation can be compensated, but I do not support the idea that the human body should be seen as a source of financial gain. We also run the risk of an unregulated financial market for tissues and cells.
Nevertheless, if we wish to attract sufficient people to come forward and provide life-saving donations, we need to consider that fair and proportionate financial compensation should be granted to the donor. Such compensation should be transparent, regularly audited and limited to making good the expenses incurred in making the donation.
Raising awareness is a better way to increase donations. One of the areas which I wished to focus on was umbilical cord blood. A single umbilical cord provides ten times as many stem cells as from the average bone marrow donation and can help patients whose own bone marrow is not working due to disease, especially leukaemia or other cancers. And yet, umbilical cords are routinely thrown away as medical waste.
A visited a hospital in North London which has the facility to collect umbilical cord blood 24 hours a day. I saw how easy it was to donate cord blood and how pleased mothers where to know that they could save another child’s life by donating their placenta and umbilical cord.
The UK government has recently invested £4 million into stem cell services. The funding enables NHS Blood and Transplant and the Anthony Nolan Trust to work together to increase UK cord blood collection and expand and improve adult stem cell donor registers.
Most of the hospitals which have dedicated cord blood collection centres are located in and around my constituency of London. This is because we need to increase donations from Black and Minority Ethnic donors. Most donors are still white Caucasians. A white patient has around a 90% chance of finding a match, while a patient from an ethnic minority background only has a 30- 40% chance. In a multi-ethnic area like London it is important to ensure that all patients have the best possible chance of finding a match, regardless of their ethnic background. NHS Blood and Transplant banked nearly 2,000 cord blood units in the period 2011-2012 and fewer than 50% were from Black and Minority Ethnic donors.
I number of EU Member States have only very basic facilities for collecting cord blood. By sharing best practice, we can look towards extending cord blood collection to as many sites as possible across Europe. In the UK the public sector is working closely with a charity and we need to support collaboration models and opportunities between the public and private banks which already exist in some Member States.
Another important element of my report is traceability. This is linked to the issue of compensation, because traceability not only ensures the quality of the donation, but it also guarantees that the tissues have come from a truly a voluntary donation. The traceability of tissues and cells is vital when it comes to the import of human tissues and cells from third countries. Equivalent standards of quality and safety must apply, and my report contains recommendations to those Member States to review and revise national provisions if they not already done so.
Traceability and transparency go hand-in-hand with taking measures to prevent the development of a black market in cells and tissues, particularly on the Internet. The potential for such a market undermines the quality and safety of tissues and cells, not to mention the associated legal and ethical problems.
Across the EU, patients die needlessly each year because they cannot find the right match which could have saved their lives. We need to untap the generosity of Europe’s citizens and encourage them to give their tissues and cells to help save or improve the lives of strangers. And by sharing donor registries throughout the EU we can make it easier to find matches and to avoid unnecessary deaths.