Draft Human Tissue (Permitted Material: Exceptions) (England) Regulations 2020

Baroness Barker Excerpts

Monday 18th May 2020 Lords Chamber

[Baroness Barker (LD)]

My Lords, the United Kingdom has been a world leader in transplant research and reconstructive surgery since the 1940s, and we continue to be the home to world-leading developments in bioscience. Moreover, we have been the outstanding leader in the ethical regulation of cutting-edge medicine and medical technology, due in no small part to the work of your Lordships’ House and the work of Baroness Warnock.

What we have today is a public policy settlement under which research scientists and medical practitioners develop pioneering research. That takes place within a framework of legal principles which is subject to parliamentary scrutiny and is regularly updated as the science advances. I pay tribute to the then Prime Minister, Gordon Brown, for setting up the Organ Donation Taskforce, which in 2008 published the Organs for Transplants report. The report provided a series of recommendations to help us to increase our organ donor rate by 2013. That 2008 strategy did indeed manage to increase the rate of donations by 50% from deceased donors and by 30% from living donors. However, that is still not enough; we need more organs, because people are dying. In 2013, NHS Blood and Transplant published its report, Taking Organ Transplantation to 2020, which set out a more detailed plan.

I congratulate the noble Baroness, Lady Finlay, and others who worked very hard to secure the Organ Donation (Deemed Consent) Act 2019, which amended the practice of the 2004 Act but not its principles by moving to an opt-out principle for routine donations. That was necessary, because many of the most suitable organ donors are people who have been involved in accidents or who have sudden life-threatening illnesses and have not given prior consent. At the point of such an emergency, they and their families are unable to give the consent that they may have wanted to do.

These are decisions that ideally are taken in advance after long and detailed consideration, but which often arise in an emergency medicine setting. I suggest to noble Lords that they go back and look at the contribution made in another debate by the noble Baroness, Lady Tonge, who comes from a family of medics. All her family members had discussed the matter and decided that they were all in favour of organ donation. However, when her daughter died in a very tragic accident, not only did nobody raise the matter with them, but they did not think about it either. That has always been a matter of regret to her.

The policy intent has always been to exclude novel and rare transplants, including situations in which cells are retrieved from organs that could be used to create an advanced therapeutic medicinal product, as other noble Lords have said. Although some people who wish to do so can leave their bodies to medical research, that research is regulated separately by the Human Tissue Authority, so there really should be no confusion between medical research and transplantation. However, the Minister stated that if a transplant that is currently considered to be rare or novel were to become common, the process of amending the law would be the one that we are following now: discussion, consultation and proposals brought forward by law. My question is this: what would be the trigger for proposing such a change in the law? As other noble Lords have said, looking back over the past 17 years, should we not be looking at a periodic review of transplant law—say, every five to seven years?

I have spoken about black and minority-ethnic communities in your Lordships’ House before. In 2003 my friends Joe and Grace Desa lost their 13 year-old only child Daryl to a brain haemorrhage. Grace and Joe showed remarkable dignity during that unimaginable tragedy. One of the things that comforted them was that many people benefited from organs and tissues donated by Daryl. In 2018, when we looked at the figures again, we saw that people from black and minority communities were still waiting longer than others and that there was comparatively low organ donation from people from the same ethnic groups. It is really important that we make these groups the focus of particular awareness campaigns. I know that my friends Joe and Grace took part in them to try to increase donations from people from south Asian communities.

I welcome the emphasis in this new code of practice on taking into account family and religious beliefs, but I go back to the point made by the noble Baroness, Lady Deech. Is the intention of the code of practice to ensure that a family’s religious belief can take precedence, but not where an individual who has mental capacity has made a deliberate decision that they wish to be a donor? Can the Minister clarify that point? What good practice guides will be given to make sure that specialist nurses who work in organ donation work to clear guidance?

I too hope that the Government set up an independent inquiry into the effects of Covid on black and minority-ethnic populations. I hope that it will not just be about the emergency process that we have been under for the last two months but will look over the longer term at what Covid has done to affect health inequalities in Britain, including transplants.

My final point has not been mentioned by other speakers in this debate. The Human Tissue Authority operates under the EU organ donation directive and the EU tissues and cells directive. If there is no deal, the EU organ donation and tissues and cells directives would no longer apply in the UK. The Government have previously said that in the event of no deal, organisations and authorities in the United Kingdom will continue to work to the high practice standards they do now, but if we are no longer under those same directives as the rest of Europe, people in this country who need organ donations will no longer be treated on the same basis as those in other European countries. The UK would be treated as a third country. Will the Government confirm that if there is a no-deal Brexit, people requiring tissues and transplants of organs from other countries will be at a disadvantage? Will they issue updated guidance on this? The guidance they produced back in 2018 no longer stands.

We all want better and quicker availability of life-saving transplants for people who need them. We broadly support these regulations, and I hope the Government will make sure that in these difficult times there are the resources to make them happen in practice.