Human Fertilisation and Embryology Bill [HL]

Part of the debate – in the House of Lords at 9:00 pm on 29 October 2008.

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Photo of Lord Patel Lord Patel Crossbench 9:00, 29 October 2008

My Lords, my name has been mentioned in relation to these amendments. The previous amendment I had tabled in Committee was directly related to the archival material that could be used for research. I do not want to re-rehearse the whole argument, because it took hours then and the time is late now.

Why do researchers want the ability to use this archival material obtained from children and adults with serious diseases? In the case of children, I have used the examples of diseases such as Batten disease, lissencephaly and nonsyndromic renal hypodysplasia. These diseases and others cause abnormalities in children's brains and kidneys. The majority of those children die in the first two years of life. We do not understand why brain cell development in these children is abnormal from the very beginning. What genetic and biological mutations occur so early on in the development of an embryo, maybe, to cause these defects? The only way to study these is to take the archival material from these children and, now that we have the ability, put it through to create pluripotent stems cells using these tissues, and begin to understand the fault that lies in the early development of these neuronal cells.

The other example I used was in adults, with material collected, over many years, of conditions such as muscular dystrophy, some of which is genetically related. After many years, we have collected only 50 such samples; they are in a tissue library in the United States. All this material was given with consent for medical research, lawfully obtained. The ability to take these tissues from people who suffer from this particular type of muscular atrophy and to learn what goes wrong at an early phase of development is very important. It is not that research is not being done on these tissues; it is that research is not allowed to be done by first converting the tissues into early-phase stem cells. That is the difference. That is why we require the government amendment to be passed. Whether this comes under human rights legislation or not, I will leave noble and learned Lords to advise us. All I can tell you is why research in this area is so vital.