My Lords, I declare my interest as an elected member of the BMA ethics committee, which looked at these issues and was involved in producing the statement quoted earlier by the noble Lord, Lord Ribeiro. I strongly support these amendments and cannot see any reason for anyone not to. They set a basic moral standard. As the noble Lords, Lord Hunt, Lord Alton and Lord Ribeiro, and the noble Baroness, Lady Northover, have laid out, the arguments they have given us are in many ways only the tip of the iceberg. There is so much more than could be said.
Our Human Tissue Authority’s guiding principles have a code of practice which has consent, dignity, quality, honesty, and openness as key pillars. These principles should reflect not only how human tissue is sourced from within our own nation but how we treat human tissue and organs from overseas. There is overwhelming evidence now that in China, Falun Gong practitioners and Uighurs, Tibetans and house Christians are being killed on demand for their organs. There is no consent, no dignity and no transparency. Only yesterday I received a letter from a woman whose mother had been a Falun Gong practitioner, and who has been in prison and effectively disappeared. She has no idea where her mother is; she has not heard from her. That is happening all over this population.
I will not repeat the statement that has already been read out, but I just hope that the Government can see that we have a moral obligation to accept these amendments. I hope that they will do so.
Amendment 297H, in my name, is supported by the Royal College of Pathologists. Post-mortem examinations here are subject to careful legislative control and we
have the Coroners (Investigations) Regulations 2013, which oversee post-mortems. When a post-mortem happens, it happens without the consent of the next of kin, of course, because there are questions around the cause of death. The coroners’ statistics for England and Wales in 2020 show that 79,400 post-mortem examinations were ordered by coroners. A fifth included histology and a quarter included toxicology samples being taken.
When the coroner’s work is complete, the tissue samples and any fluids taken—the tissue being in the form of blocks and slides—must be destroyed unless specific consent has been provided by someone in a qualifying relationship. However, consent is logistically very difficult to obtain in practice. The McCracken review of the Human Tissue Act in 2013 recommended that:
“Consideration should be given (inter alia) to reducing the scope so that microscope slide and tissue block samples and bodily products such as saliva, urine, and faeces are excluded”.
The Government accepted this recommendation, but the issue has not subsequently progressed.
There are some real difficulties with post-mortems. A post-mortem is effectively a snapshot of the deceased at the point of death. It is only by going back into the clinical records that the pathologist gets some picture of what happened pre-mortem, and many of the other factors. But at the end of the day, it is often subjective in terms of determining the likely cause of death for the report that is then signed off. In Scotland, tissue blocks and slides are deemed to be part of the clinical record and therefore do not have to be destroyed after the procurator fiscal’s investigations are complete. However, no whole organs can be retained in Scotland without explicit consent. In the light of Alder Hey, it is important to stress that point.
Changing to a system that reflects Scottish law could be beneficial because it would provide information about the cause of death if new circumstances came to light months or years after an investigation was complete. Indeed, we have recently had the case of the Farquhar family, where the evidence of long-term poisoning probably came to light many years after the person had died. Crucially, forensic deaths can be masked by natural disease processes and storage of tissues and fluids as part of the medical record would help clarify these at a later date when new information came to light. In a way, that is essential for completion of justice.
In addition, genomics research is rapidly developing, so the family may want to access the tissue later on as disease processes become more clarified. Metabolic storage disorders such as Fabry or Gaucher disease have been examples of this.
The tissue blocks from post-mortems are usually larger than the small pieces of tissue in a biopsy from a living person. That is particularly relevant where you want a piece of the heart or the brain, because a large biopsy from a living person would be impossible. There is also a third use of these tissue blocks and slides, which is as teaching material for autopsy pathologists. There is now a real shortage of teaching material, not only for pathologists who are in training but for ongoing audit of pathology processes.
So this amendment would bring the Human Tissue Act in line with the position in the Human Tissue (Scotland) Act 2006, where tissue samples as blocks and slides, but not—I stress not—organs, automatically become part of the person’s medical record after a post mortem. Explicit consent to keep them does not have to be sought from a grieving family, but it would allow justice in the long term to be pursued if necessary, and it would allow better development of autopsy pathologists.