Journal of medical ethics 1994; 20: 36-40 J Med Ethics: first published as 10.1136/jme.20.1.36 on 1 March 1994. Downloaded from Attitudes of women to fetal tissue research Fionn Anderson, Anna Glasier, Jonathan Ross and David T Baird Edinburgh Authors' abstract research had been approved by an ethical The use ofhuman fetal tissuefor scientific research has committee. enormous potential but is subject to government In the late 1980s, concerned principally about legislation. In the United Kingdom the Polkinghorne experiments in which human fetal tissue was being Committee's guidelines were accepted by the Department grafted into the brains of patients suffering from ofHealth in 1990. These guidelines set out to protect Parkinsonism, the British government invited a women undergoing termination ofpregnancyfrom second committee, led by the Reverend Dr John exploitation but in so doing may significantly restrict Polkinghorne, to review Peel's guidelines. The potential research. Although the committee took Polkinghorne Committee took advice from organisa- evidence from a wide variety ofexperts they did not seek tions involved in medical research and in the pro- the views ofthe general public. vision of abortion services and also from a significant a We asked 108 women about to have therapeutic number of religious organisations and groupscopyright. abortion; 167 women who had had a pregnancy campaigning against abortion. The recommen- terminated in the past, and 419 women who had never dations of the committee were published in 1989 (3) had an abortion, their views on research using human and accepted by the Department of Health in 1990. fetal tissue. Regardless of their past experiences the One of the principal concerns of the committee women were overwhelmingly in favour of research using and of opponents of fetal tissue research was that fetal tissue (94 per cent). They made little distinction women might be pressurised into terminating a between basic research and research with obvious pregnancy in order to provide fetal material. To http://jme.bmj.com/ clinical relevance and supported the concept ofusing safeguard women from exploitation the new recom- transplantedfetal tissue for the treatment ofadult mendations included a recommendation that disease such as Parkinsonism. Women about to undergo doctors involved in obtaining fetal tissue, ie those an abortion were significantly more likely (p<0 001) to who agreed to a woman's request for abortion or approve ofall types of research including that aimed at who performed the termination - called in the report improving methods of abortion and research using live 'the source' - should be totally separate from doctors fetuses in utero. and scientists carrying out research - 'the user'. Indeed the two parties were specifically prohibited on September 29, 2021 by guest. Protected from discussing the proposed research. Women Introduction from whom tissue was obtained should give a The use of human fetal tissue for research purposes general informed consent to the research but should is a subject which arouses strong feelings. Although not be told what the research was about or even there is no doubt that scientific research using fetal whether the tissue was used. tissue has enormous potential, different govern- Although the committee sought the views ofmany ments impose very different restrictions on its use relevant bodies, no attempt was made to seek the (for review see British Medical_Journal (1). In the UK opinions of women of reproductive age and in an advisory group was asked in 1970 'to consider the particular of women about to have a termination of ethical, medical, social and legal implications of pregnancy. using fetuses and fetal material for research'. The In this study we have sought to investigate the resulting Peel Report, published in 1972 (2), attitudes of women to fetal tissue research by a recommended that research should be allowed on questionnaire based on the points brought out in the fetuses weighing less than 300g, provided there was Polkinghorne Report. no objection on the part of the mother and the Subjects and methods Key words Thirty questions were devised to investigate the Attitudes; fetal tissue; research. attitudes of women to a variety of aspects of fetal Fionn Anderson, Anna Glasier, J7onathan Ross, David T Baird 37 J Med Ethics: first published as 10.1136/jme.20.1.36 on 1 March 1994. Downloaded from tissue research and to the main recommendations of the Chi Square test with Yates correction where the Polkinghome Report. The questionnaire was appropriate (Epi Inf v 5-01a, Public Domain designed to be completed by women while waiting at Software). clinics. Effort was made to simplify the question- naire by providing explanatory paragraphs where appropriate, giving examples of relevant research Results areas. A pilot version of the questionnaire was given DEMOGRAPHIC DETAILS to 30 women attending a family planning clinic, The demographic details of the women completing minor modifications were made and a final version the questionnaire are shown in Table 1. Women prepared. attending for termination of pregnancy were younger Two groups of women were selected in an (p<0 001) and more likely to be unmarried attempt to identify differences of opinion that might (p<0 001) while women who had never had a relate to different reproductive experience. Five termination of pregnancy were less likely to have had hundred and twenty-seven consecutive women children (p<0-001) than women in the other two attending a large family-planning clinic in the centre groups. Forty-two per cent of women attending for of Edinburgh (The Dean Terrace Centre) were an abortion had had a previous termination of given the questionnaire, 108 of these women had a pregnancy, while only 13 per cent of women who history of termination of pregnancy while 419 had had an abortion at some time in the past had had women had never had an abortion. A second group more than one. of 167 women attending the Royal Infirmary of Fewer women attending with a request for Edinburgh who were pregnant and requesting ter- abortion were aware of the existence of research mination of pregnancy were also asked to complete using fetal tissue (28 per cent v 53 per cent, the questionnaire. One hundred and fifty-eight p<0o001). women did so; two women were short of time; two said they found the subject too upsetting, while five ATTITUDES TOWARDS FETAL RESEARCH refused to participate as they felt that they held no per cent women Only 6 of said they thought it was copyright. strong views. None of the women were given the unjustifiable to use fetal tissue for research. Of the questionnaire until after the gynaecologist had 94 per cent of women who felt that research was agreed to the request for abortion and the woman justifiable, 88 per cent thought it appropriate to had left the consulting room. The person who asked undertake research aimed at improving our under- the patient to complete the questionnaire was not standing of the basic physiology of the developing involved with the consultation. It was made clear fetus and 84 per cent said they would allow this sort that women were not being asked to participate in of research to be done on their own fetus. All women http://jme.bmj.com/ the sort of research being discussed nor was any part who approved of research agreed with the idea of of their treatment dependent upon their responses to undertaking research into clinical problems affecting the questionnaire. The study and the questionnaire the fetus and neonate, such as investigating the effect both received the approval of the Paediatric/ of giving drugs to accelerate lung maturation in the Reproductive Medicine Ethics of Medical Research event of premature labour. Only 2 per cent of the Sub-committee of the Lothian Health Board. women felt reluctant to allow their own fetus to be The data were entered onto a computerised used for this kind of research. Eighty-seven per cent on September 29, 2021 by guest. Protected database (d Base VI v 1 1, Borland software) and of the total sample approved of research which initial analysis performed by summing the answers aimed to improve methods of abortion although for each question and subdividing by group. significantly fewer of the women who had never had Statistical analysis between groups was made using an abortion approved of this kind of research (84 per Table 1 Demographic details of respondents Gynaecological. Outpatient clinic Family planning clinic Attending for abortion History of abortion No abortion Number 158 108 419 % <20 years 20 2 13 /o/ <20-39 years 74 90 82 /o>39 years 6 8 5 % with children 29 28 15 O/o married/cohabiting 28 50 47 % higher education 58 66 68 38 Attitudes ofwomen tofetal tissue research J Med Ethics: first published as 10.1136/jme.20.1.36 on 1 March 1994. Downloaded from cent v 92 per cent, p<0001). Eighty-seven per cent Practicalities of research of women felt that research aimed towards using Less than half of the women felt that abortions fetal tissue for transplantation was in principle right should be especially timed to allow research to take and 86 per cent of them would allow their own fetus place. However, once again women about to to be used. Overall fewer women felt that research undergo an abortion were more likely to feel this on a live fetus was justifiable but significantly more would be acceptable (41 per cent v 27 per cent, of the women about to undergo termination of p<0-001). Few of the women felt their decision to pregnancy found this idea acceptable (68 per cent allow research on their fetus would be affected if p<0-001) and more than half of them would have either they (8 per cent) or their fetus (7 per cent) had permitted research to be carried out on their own to be tested for HIV infection.