A study of public opinion on the use of tissue samples from living subjects for clinical research

M L Goodson; B G Vernon

doi:10.1136/jcp.2003.9886

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A study of public opinion on the use of tissue samples from living subjects for clinical research

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A study of public opinion on the use of tissue samples from living subjects for clinical research
Peter Furness
Published on: 18 April 2016

Published on: 18 April 2016
A study of public opinion on the use of tissue samples from living subjects for clinical research
- Peter Furness
Dear Editor
The paper by Goodson and Vernon on public opinions of tissue sample use,[1] contains a fundamental flaw which, unless I am mistaken, ought to have prevented its publication.
It is generally accepted that post mortem tissue has much greater emotional significance than samples of human tissue removed from living patients. This is supported by a survey of public opinion conducted by the MRC a...
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Dear Editor
The paper by Goodson and Vernon on public opinions of tissue sample use,[1] contains a fundamental flaw which, unless I am mistaken, ought to have prevented its publication.
It is generally accepted that post mortem tissue has much greater emotional significance than samples of human tissue removed from living patients. This is supported by a survey of public opinion conducted by the MRC and the Wellcome Trust since the events at Alder Hay were published.[2] It is also the stated opinion of members of the Retained Organs Commission. It should be self-evident, if one merely considers how a lock of hair from a deceased relative may be treasured in a silver casket, but at the hairdresser the same material is unceremoniously dumped in the bin.
Furthermore, the emotional significance of whole organs is greater than that of small groups of cells. Goodson and Vernon purport throughout their paper to be discussing research using tissue removed for therapeutic or diagnostic purposes from living patients.
However, the questionnaire they administered (their figure 1) does not make this clear; it merely asks about “pieces of any of the following body tissues or organs”, followed by a list which includes heart and brain, emotionally important organs which are rarely removed other than at autopsy.
Nowhere is it explained that the questions should relate to specimens which have already been removed and which, if not used for the good of mankind, would otherwise be incinerated.
Nowhere is the size of the “piece” defined, or the reason for its removal.
If one approaches someone in a dental surgery waiting room and says “Can I use a piece of your brain for research?” it is hardly surprising that a high proportion refuse!
The authors mention the striking difference between their results and others published in the literature. They mention the 99% consent rate from the Peterborough Tissue Bank, and wrongly ascribe the difference in their results to changes since Alder Hay. A very recent report from Peterborough has confirmed that their consent rate remains 99%, even though the tissue is to be transferred to commercial research companies.[3]
The authors also question whether having surgeons requesting consent could result in coercion. This too does not apply to the Peterborough tissue bank, where consent is requested by nurses employed by the tissue bank.
I suggest that the dramatic difference is actually accounted for by two factors. First, in Peterborough the tissue bank staff take up to 30 minutes per patient to explain the issues before requesting consent. Second, in Peterborough the patients already know, before they are approached by the tissue bank, what tissue is to be removed and why. They are not discussing a hypothetical “lump of brain”. Therefore there is no possible confusion between consent to removal of tissue and consent to research use. Goodson and Vernon did nothing to explain to the dental patients why tissue might be removed.
This raises a further issue which is ignored by Goodson and Vernon. One frequently hears the phrase “fully informed consent”. Is there not such a thing as fully informed refusal? The ethical importance of adequately informed refusal is self-evident from the following hypothetical scenario.
Imagine a patient who is asked to consent to research use of resected tissue without further explanation. The patient refuses, in the mistaken belief that their consent will remove all safeguards and that their tissue could then be used for unethical purposes such as reproductive cloning.
Imagine that the patient subsequently has a full explanation and realises that:
(i) their original fears were unfounded and
(ii) their own medical treatment and diagnosis have been based on the use of tissue from other, previous patients; a benefit which their refusal has now denied to future patients.
I believe that this could readily induce a sense of shame, guilt and anger in an altruistic patient who has been misled into inadequately informed refusal, and who has therefore been deceived.
The enormous importance of all this is obvious when considering the new Human Tissue Bill. Not only does this Bill absurdly provide almost identical “protection” for cells in urine samples to that provided to the hearts and brains of dead babies. It is also being introduced with an assumption by Ministers that requesting and recording consent for subsequent tissue use can be done in almost no time at all – certainly less than a minute. Even if patients are always asked (which seems unlikely), inadequately informed refusal seems inevitable.
I fear that in the future the results of Goodson and Vernon will be inappropriately and uncritically cited by those who wish to apply restrictions on the use of human tissue, as evidence that large proportions of patients object to research use of their specimens – even when the ‘tissue’ is a urine sample or a cervical smear. Other, better studies have already shown that, if adequately informed, the vast majority of patients consent to the research use of surgically resected tissue, even if the research is in a commercial setting.[3]
If this happens, your publication of this seriously flawed paper will have done a disservice to pathologists, to medicine and to the well being of future patients.
References
1. Goodson M L, Vernon B G. A study of public opinion on the use of tissue samples from living subjects for clinical research. J Clin Pathol 2004; 57:135-8.
2. Public Perceptions of the Collection of Human Biological Samples. Medical Research Council, 2001. http://www.wellcome.ac.uk/en/images/biolcoll_3182.pdf
3. Jack A, Womack C. Why surgical patients do not donate tissue for commercial research: review of records. BMJ 2003; 327:262-262.
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Conflict of Interest:
None declared.
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