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I read with interest and increasing concern the paper by Goodson and Vernon,1 “A study of public opinion on the use of tissue samples from living subjects for clinical research”. The paper demonstrates that the use of a vaguely worded and ambiguous questionnaire leads to misleading results. A few of the problems with the questions may be taken individually:
“Would you be happy for pieces of any of the following body tissues or organs to be used in clinical research? (Eyes, lung, heart, tissue from head and neck, embryo, brain, ovary, testes, bone, and breast.)”
The question could refer to postmortem tissue and the choice of organs is (as the authors confess) deliberately “emotional”, with no insight into every day pathological services. Heart, brain, and eyes are not exactly common surgical specimens, whereas embryos are subject to special guidelines. Surely, this question is almost designed to make the patient believe it refers to postmortem organs? The use of subjective words such as “happy” is extremely unhelpful. “Are you happy to vote Labour?” would not, for example, be acceptable in a comparable political survey!
“What kind of research would you be happy for your tissues to be used for? (Cancer research, testing medicines, genetic cloning, general knowledge of body tissues, genetic research for diagnosis or treatment of, for example, Down’s syndrome.)”
Again scientific imprecision exists, because the writers of the questionnaire appear not to understand that these fields are interdependent. In particular, the lack of public understanding of cloning has caused them to reject this field, with no idea that this may include tissue culture or polymerase chain reaction.
“Would you want to be informed if your tissues were to be stored beyond the time required for diagnosis?”
This question seems to show no knowledge of the necessity for longterm storage of samples after diagnosis. Tissue retention for medicolegal, audit, clinical governance, and comparison with later samples has been ignored. No explanation has been given to the patients of why this is in their best interests.
“Would you be happy to give consent for a child’s tissues to be used for scientific research?”
Apart from the obvious flaw that it has not been stated whose child is being talked about, again the question appears almost deliberately ambiguous and could be taken to refer to postmortem tissue. Apparently, the designers of the questionnaire are interested in “scientific research” on children’s tissues, whereas in adults in question 1 it is only “clinical research”.
“Would you be happy to give consent for your tissues to be used to teach medical students?”
The word happy is used again, in addition to a lack of explanation of how the tissues are “used”, and the vital role of histology in teaching medical students and pathology trainees.
I suggest to the authors that their survey, in contrast to all other studies, shows that patients were unwilling to donate their tissues because they were presented with a poorly designed, misleading survey.
We are grateful for the opportunity to respond to Dr Berney’s letter. The questionnaire used in our study was piloted on a similar group of respondents. The patient information leaflet and consent form given and explained before completion of the questionnaire made it clear that we were only concerned with tissue donated by living subjects for research and did not refer to the use of postmortem specimens or tissue or organs for transplantation. In addition, all respondents were given the opportunity to ask questions before completing the questionnaire if they were unsure of the meaning of any questions.
We imagine that many of the research fields are interdependent, although the general public may not be aware of this. Our study did not attempt to explain why respondents answered questions in any particular way, but it shows that people may or may not be willing to donate different types of tissue for different types of research. This may be because of a lack of understanding of the clinical and laboratory techniques used in research, but we have not attempted to prove this in our study.
We agree that no explanation was given to respondents (who were not patients) about the benefits of retention of tissue samples; this would have biased the response.
Dr Berney says that our question surrounding consenting for donation of a child’s tissue for research is flawed because it does not explain whose child we are discussing. Our pilot study demonstrated that the phrase “your child” eliminated responses from childless adults, adults with children over 16 years of age who were able to consent for themselves, and individuals who had children, but for various reasons were no longer the guardians of such children. The question merely attempted to identify whether or not there was some reluctance by adults to consent for children.
Our research showed a snap shot of public attitudes to tissue donation from living subjects for clinical research and offers no more than an indicator of public attitude, and like most research requires further qualification.
We are grateful to Dr Berney for his comments because they open up the debate on whether the public accepts tissue donation for research purposes. To restore public confidence in the medical profession and research in general, it is crucial for the profession to take account of public perceptions and to understand the nature of the explanations that are required.