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Baroness Finlay of Llandaff: My Lords, I wish to add to the words of the noble Earl, Lord Howe, who has so clearly explained why we need to allow the High Court sometimes to be the final arbiter. The government amendments are tremendously welcome, but there are families who have not spoken to each other for many years. Often in such families it is not a question of refusing consent having had the information to refuse; what often happens is that one side of the family flatly refuses to have anything to do with the other, so they
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will not even listen to the arguments. The problem is that an independent healthcare representative may visit the relative and ask to talk to them about their refusal, at which point the door will be slammed in their face or a load of expletives will be hurled at them. What can they do? Nothing, except go away. If they put anything in writing, it is simply torn up without being read.

I know that that would not apply to anyone in your Lordships' House, where we all try to talk to our families, even when we disagree with them. But there are families out there who for decades have said, "I have always said that I will never speak to so and so. I never will, and that is that". It does not seem right that somebody, through pure obstinacy and some longstanding vendetta, often over something so trivial that you would not believe it except that it is true, can effectively jeopardise or deny the life of another person. At that point the state must intervene to ensure that the right to life of each of its citizens is potentially upheld and protected. It is through a hearing in the High Court that that could happen. That is why this final provision for the "once in a few years" scenario is so important.

Lord Walton of Detchant: My Lords, I welcome the very helpful government amendment. But, equally, I must express my concern, as have the noble Earl, Lord Howe, and my noble friend Lady Finlay, over the Government's decision not to consider further Amendment No. 75. I stand by the principle of patient autonomy; I favour the principle of informed consent. But there are circumstances, with which we have become very familiar through press reports, when the High Court has overridden the wishes of an individual. I can think of a series of different circumstances—where, for instance, women have been forced to have a Caesarean section, and similar examples—which have hit the press over many years. No one is suggesting that any provision such as that enshrined in Amendment No. 75 should be anything other than a very rare exception.

Let me give another example from my own personal experience. There is a progressively fatal disease called Huntington's chorea which is dominantly inherited. That means that half of an affected individual's offspring of either sex are likely to be affected by the disease. But the problem with Huntington's disease is that the symptoms and signs do not usually appear until the mid-40s or even later, by which time, for example, a woman would have passed through her major reproductive period. In some such families I became familiar with what one might almost call a conspiracy or culture of silence, where the family was simply not prepared to talk about it. If a woman whose father died of Huntington's chorea and is still below the age of onset has a daughter who wishes to know whether she is carrying the gene, it would be very helpful to have tests carried out on her mother in order to determine whether she is a carrier who is likely to pass it on to her son.
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There are many other examples. I have been approached by the Genetic Interest Group, a national alliance representing individuals and families affected by genetic disorders. It has more than 130 groups in membership and a smaller number of individual members. It is deeply concerned about this clause and would like to see, as I would, that in exceptional circumstances the High Court might be willing to listen to all the arguments and to override the refusal of consent to DNA analysis given by an individual who is at risk from a genetic disorder and whose relatives may also be at risk.

Lord Turnberg: My Lords, I too am delighted with the government amendments, and I welcome them. However, although I may be accused of looking a gift horse in the mouth, I must say that I support the noble Earl's amendment, largely because it asks simply that an individual in the situation that we heard described can have access to the High Court. We are not asking for anyone to override a person's will, but access to the High Court is not something that we should deny such people.

Baroness Neuberger: My Lords, I too am grateful to the Government and am delighted at the amendments that have been tabled. However, I too support the noble Earl, Lord Howe, on Amendment No. 75.

I shall not go through all the arguments; they have already been well rehearsed around the House. However, with reference to the right reverend Prelates present, I shall draw on some of my pastoral experience as a rabbi. Sometimes, families fall out—one can only describe it as "big time"—often over issues such as money. In such a situation, an estranged member of the family may refuse—partly because they hope that their much-loathed cousin will shortly depart this earth—even though it would be possible to help by, at least, allowing some form of testing to take place. We ought to allow some reference to the High Court.

This is the proper use of the High Court. We are not saying that the High Court must agree, but there should be reference to it in such circumstances. More times than I care to remember, I have experienced circumstances in which families have fallen out and have behaved irresponsibly and horribly. That is why I support the amendment.

Baroness Hayman: My Lords, like others, I welcome the significant shift in the Government's position. Reference to the Human Tissue Authority, rather than to the High Court, will, in the majority of such difficult cases, be a more appropriate way of dealing with the matter. The extension of the circumstances in which that can be done is to be welcomed and shows a real response to the concerns voiced in Committee.

The case that the noble Earl made is persuasive, however. The ability to have access to the High Court for decisions in hugely difficult areas is justified because we are not talking about the principle of consent by the patient overriding on every occasion the interests of the researcher, which is—perhaps I am
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putting it crudely—the underlying current of the Bill. We are talking about a situation in which the interests of two separate patients or potential patients may conflict.

It would not be a good way forward for there not to be access to some form of conflict resolution in those circumstances because the Bill is absolutist. They would be rare cases, but we see such rare cases before the courts at the moment, involving parents and children and the interests of different patients. The interests involved in court-ordered Caesareans are hugely difficult to determine, but they involve a real clash between the interests of two individuals. As parliamentarians, we cannot lay down in legislation in whose interests such conflicts should be resolved, but it is our responsibility to lay down a process by which they may be resolved.

The Lord Bishop of Peterborough: My Lords, I support many of the comments that have been made. For pastoral and theological reasons, I support the amendment.

Certainly, you may not own my body, but neither totally do I. As John Donne memorably said, none of us is an island; we all belong to each other. There must, therefore, be a mechanism by which issues of the common good can, in very specific circumstances, override informed consent, which is what we all agree with. I hope that the Government will think again about the amendment.

Baroness Andrews: My Lords, the noble Earl has been extremely persuasive. I shall reflect on what he and other noble Lords said. I can give no assurances or commitments because some major issues are involved, not least the fact that the amendment would breach the principle of the Bill. We want to think hard about that.

I understand that in such situations other ways of obtaining the necessary information are sometimes available and that the proposed route is not always the only one. We will want to consider that, as the matters involved are not always matters of life and death. However, we will take the discussion further at a later stage and consider some of the implications on both sides of the argument.

On Question, amendment agreed to.

The Deputy Speaker (Lord Lyell): My Lords, as Amendment No. 14 has been agreed to, I shall not call Amendment No. 15.

[Amendment No. 15 not moved.]

Baroness Andrews moved Amendment No. 16:

On Question, amendment agreed to.

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