Stored tissue may be important for the future care of families

Editor—Obtaining informed consent for storing tissue is problematic. Which normal clinical practices need written consent and what material constitutes tissue? In how much detail should a practitioner obtain consent for a blood sample taken for a full blood count or for biochemical analysis, and what information can or should be given about the ultimate fate of samples such as tumours removed at surgery?

These are not trivial questions: their answers lie at the heart of good clinical practice. Clinical geneticists are familiar with the need for and the difficulty in ensuring that patients have given fully informed consent before blood is taken for DNA analysis. The pace of advance has blurred the boundaries between today's research and tomorrow's clinical practice.¹ Clinical geneticists are often asked why written consent is required for some clinical tests but not others. Unsurprisingly, many patients and doctors are still confused about the difference between clinical genetic tests and genetic research.

As the Human Genetics Commission asks whose hands are on our genes, the long and distinguished history of clinical genetics in the United Kingdom and the contribution of clinical geneticists to ethical debate should be remembered. In genetic disease ethical considerations must be seen in the context of a family and a multigenerational history. Tissue samples from dead members of a family are often needed to detect gene defects and enable accurate diagnosis. This tissue often comes from stored surgical blocks, whose lack would compromise the care of current and future generations. Similarly, when a couple have lost a child with a potentially inherited condition, analysis of tissue from the dead baby may be crucial for accurate genetic counselling and future prenatal testing.

If too much restriction is placed on storing tissue and if obtaining consent becomes too complex, patients may well be disadvantaged by the very mechanisms aimed at protecting them. Indeed, the future may show how inappropriate it was that samples were not kept for future generations to allow them to benefit from advances resulting from the human genome project.

Future problems with storing pathological material must be avoided. The medical profession must work with patients to enable a fully informed debate about informed consent. Public education is needed to ensure that people are aware of the full consequences of their decisions in giving or withholding consent for pathological examination and storage of tissues.