11 November 2009
There have been new reports that UK doctors are calling for retention of human tissue for genetic testing in cases of sudden cardiac death among young people, in case of an underlying genetic cardiac condition that could also put relatives at risk. This follows calls for greater awareness among doctors and coroners about inherited cardiac conditions and their role in sudden deaths, and clarity for coroners about their responsibilities in such cases, from the PHG Foundation report Heart to Heart: Inherited Cardiovascular Conditions Services published earlier this year (see previous news).
The BBC has reported the suggestion from one clinical geneticist that until coroners' forms could be changed to deal specifically with consent for the pathologist to retain tissue for DNA extraction and storage in such cases, they should consider taking a tiny tissue sample and approaching relatives for consent, as some coroners already do. Dr Mary Sheppard, of the Royal Society of Medicine said: "If coroners routinely requested consent from the family to retain material for DNA testing at autopsies we would be able to find out far more about how the person died and possibly prevent other deaths in the same family" (see BBC news report). Adrian McNeil of the Human Tissue Authority said it was “alarmed about any public statement that urges practitioners to consider breaking the law governing consent and the taking of tissue for DNA testing”, although of course the doctor had not been advocating retaining or testing tissue against the wishes of relatives.
The PHG Foundation report, the product of an expert Working Group, and which has just won an NHS Partnership Award, called for legislative change and other measures to encourage the retention of tissue samples following sudden cardiac death, as well as clarification of the responsibility of coroners to family members who may be at risk. However, the importance of best practice in gaining consent from family members for investigation of the possible presence of an inherited cardiac condition in the deceased person was also emphasised.