Human Tissue (Availability)

Debate between Jo Swinson and Mary Creagh

Wednesday 23rd June 2010 Westminster Hall

[Mary Creagh]

I agree with the hon. Gentleman. I know that Liberal Democrats have an antipathy to the national patient care record and have called for it to be scrapped, but it might represent an excellent opportunity to deal with this matter. Of course, people would have to opt in, and nothing I have heard today changes that.

The hon. Member for East Dunbartonshire asked whether people would opt in or opt out. We need to go back and look at consent, which is at the heart of this debate. As we have heard, the Human Tissue Act 2004 created the framework for the removal, storage and use of tissues and organs of the deceased.

We must remember the circumstances that gave birth to the Act. It came about because of public inquiries into the events at Bristol Royal and Alder Hey hospitals, where organs and tissues from children who had died had been removed, stored and used without consent. Scientists have been doing that for generations. I do not think that there is any question about that, and we can understand why they want to progress medical research. However, years—in some cases, decades—later, families discovered that the children who they thought they had buried had not been complete.

The series of moral, ethical and religious issues that came out of that practice had to be, and were, addressed by the Labour Government. The inquiries together with the Isaacs report, which focused on the retention of adult brains following coroners’ post-mortems, revealed that storage and use of organs and tissue without proper consent was commonplace. We as legislators had a duty to change that.

The chief medical officer concluded that the law needed to be changed. We had a wide-ranging public consultation, “Human bodies, human choices”, which set out proposals and led to the Act that created the Human Tissue Authority, which licenses and inspects institutions. The Act is based on the principle that consent should be given by the living. If that key principle is to be changed, it must be changed with a great deal of consent. I do not detect a groundswell of public opinion or hon. Members in this House wishing to reopen the consent issue, despite the efforts of Dr Harris, the former Member for Oxford West and Abingdon.

[Jo Swinson]

In the context of the legislation, I agree with the points that the hon. Lady makes about consent being vital. However, would she accept that the current problem is that many people would be happy to consent, but their wishes are not being fulfilled because they are not even being asked?

[Mary Creagh]

Absolutely. The hon. Lady makes a valid point, and systems, policies and processes are the only way. It is not laws or our passing Acts in Parliament that will make it happen. This is about the 60% of trusts that do not collect any form of tissue, but get rid of everything. It is about people being made aware—there is an educational side to this—and it is about having a system in place. If we want people to donate their organs, we have to make it as easy as possible, so that they can do it when they open a bank account or go to Boots pharmacy to pick up a prescription. Whatever it is, it has to be made easy.

Most people hope throughout their lives that they will not need a huge amount of surgical intervention. That is what we all hope for, is it not? I believe that the hon. Lady is right that most of those who are unfortunate enough to have repeated operations would like to help other people through medical research.

It is important to say that lifetime consent for a tissue sample is already possible under current legislation, and people may give “generic and enduring” consent for their own sample, but the hon. Lady may be trying to bring to the foreground lifetime consent for any medical research purposes. However, the law in such areas cannot and should not stand still, and we must renew the working of the existing law.

I was interested to hear the hon. Lady’s reference to the Human Tissue Authority’s evaluation of perceptions of how the legislation and regulations that flow from it have affected researchers. The Human Tissue Authority has said that it wants to ensure that researchers have access to high-quality samples by consolidating stocks throughout the sector; that brings us back to the idea of banks. It also wants to reduce the regulatory burden on the research sector by using open-ended rather than fixed-term licences, and moving to a risk-based approach to regulation rather than regulating everyone.

The hon. Lady will be interested to hear that the Nuffield Council on Bioethics is consulting on options for boosting the supply of organs and human tissue. It is clear that a problem is emerging as fertility sciences improve. There is a shortage of organs for transplant, as many hon. Members have said, and of sperm and eggs for donation. I prefer to refer to “sperm” rather than “gametes”, not least because I do not know how to pronounce that latter word. Let us call a sperm a sperm.

Transplant patients and women seeking fertility treatment may travel abroad, often to places where different rules apply or, in the case of organ donation, where there may be an illegal market. We must watch that carefully because moral and ethical considerations may be involved if inducements are offered, whether cash or paying funeral expenses for people who give their organs. Those are some of the issues being debated, and the consultation closes on 13 July. I put that on the record so that any hon. Members who want to participate in the consultation may do so.

New stem cells made by reprogramming adult tissue into induced pluripotent stem cells—iPS cells—which come not from human embryos but from adult skin cells, have been possible only since 2007, so science is already well ahead of legislation in this area. The iPS technique could lead to new breakthroughs for Parkinson’s disease, motor neurone disease, diabetes and paralysis, and that would obviously be very welcome.