Tissue samples often retained without informed consentBMJ 2001; 322 doi: https://doi.org/10.1136/bmj.322.7282.320/a (Published 10 February 2001) Cite this as: BMJ 2001;322:320
Organs, tissue, and body parts obtained from postmortem examinations have systematically been retained by pathology services over the past 30 years, often in the absence of informed consent from relatives, and in many cases directly contravening the Human Tissue Act 1961, a census in England has shown.
The census, conducted by chief medical officer Liam Donaldson and published to coincide with the report on organ retention at Alder Hey Hospital in Liverpool (3 February, p 255), has found that pathology services in England currently hold over 100000 human tissue samples. Of these, 54300 were retained from over three million postmortems conducted from 1970 to 1999. The rest date from before 1970 and are held in museum or archive collections.
The figures come from census forms completed by all NHS trusts and medical schools during 2000. They show that the bulk of the retained human tissue is held in specialist centres or medical schools; 88% of the tissue is accounted for by just 25 of the 210 NHS trusts and medical schools.
The census shows that, although most trusts try to obtain signed agreement from relatives for postmortems and organ retention, this often falls far short of “fully informed consent.”
Weaknesses noted on consent forms include:
Use of the phrase “I do not object” rather than seeking positive agreement; such wording is criticised by the report as “outmoded and paternalistic”
No opportunity to refuse or limit the extent of a postmortem
A choice of words that implies that agreement to postmortem includes agreement to retention of the tissues
No choices for relatives on how retained tissue and organs should be disposed of.
The report concludes that, although the retention of human tissue can have great value to medical research, training, education, and audit, pathologists should not be allowed to ride roughshod over the feelings of bereaved families. (See pp 309, 371.)
Report of a Census of Organs and Tissues Retained by Pathology Services in England can be accessed at www.doh.gov.uk/organcensus