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Abstract

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. METHODS
  5. RESULTS
  6. DISCUSSION
  7. References
  8. Appendix

Objective To investigate the views of Finnish doctors concerning fetal screening.

Design Anonymous, questionnaire survey conducted in 1996–1997.

Population A representative sample of gynaecologists, paediatricians and general practitioners in Finland. Both leading doctors and ordinary practitioners were included.

Results Most doctors said that serum screening for Down's syndrome and ultrasound screening for structural abnormalities should be available for all pregnant women. In response to more direct questions, doctors acknowledged many drawbacks to Down's serum screening, notably the worry due to false positives. Only a few were against abortion, and a fifth said fetal screening is partly based on a eugenic ideology. There were some differences between the different doctor groups, but the overall impression was of similarity rather than divergence, both between the different specialist groups, and by the position of the doctor (leading vs ordinary).

Conclusions Finnish doctors support current fetal screening, but many acknowledged resulting ethical, psychological, and social problems.


INTRODUCTION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. METHODS
  5. RESULTS
  6. DISCUSSION
  7. References
  8. Appendix

Traditionally screening has been an important element of prenatal care to improve pregnancy outcome. Screening of the fetus and its characteristics and health differs from other pregnancy screening methods in two ways. Firstly the likelihood of causing harm to mother and fetus is greater (e.g. miscarriage can occur after amniocentesis) and secondly the main response available for any detected problem is an abortion, rather than improving the health of the fetus. Because fetal screening is a socially organised action, ethical and social questions beyond fetal rights and women's right to abortion are raised, and the question complex of societal values and eugenics emerges.

Doctors play an important role in fetal screening. Medical researchers developing the required technical know-how and doctors in decision-making positions are crucial in introducing fetal screening1,2. As prenatal-care providers, doctors participate in the screening process itself and care for those in whom screening indicates a possible problem. Some doctors also develop policy on a political level, thus influencing public opinion. In the early 20th century doctors had also an important role in the eugenics movement3. Being representatives of society, doctors are regarded as ‘informed citizens’ and their opinions tend to be less confused by a lack of technical knowledge.

The purpose of this study is to report the views of Finnish doctors on fetal screening and compare the opinions of different doctor groups. Our hypothesis was that the leading doctors would be more in favour of fetal screening than ordinary practitioners, and that gynaecologists would be more in favour than paediatricians.

METHODS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. METHODS
  5. RESULTS
  6. DISCUSSION
  7. References
  8. Appendix

Finland has a uniform, community-based prenatal care system run by midwives (public health nurses) and good perinatal outcomes4. The health system, the scientific community and the public have only recently been challenged by the prospects of fetal screening. A specific example of fetal screening examined in this study is screening for increased risk for Down's syndrome using biomarkers in maternal serum (serum screening), which was in the process of being introduced in the early 1990s. In serum screening, women at increased risk are searched for, those found are offered a diagnostic test (usually amniocentesis), and if the syndrome is found, an abortion is offered as a solution. At the time of the survey in 1996–1997, there was no national uniform programme of serum screening for Down's syndrome. It had been experimented with in one area starting in 1987, and by 1995 screening was done in two-thirds of the municipalities.

This study is based on an anonymous questionnaire survey mailed to gynaecologists, paediatricians and general practitioners. The questionnaire contained multiple choice and open-ended questions on fetal screening and genetic screening in general (separated by subheadings) and on the background characteristics of the doctors. Appendix 1 shows the questions used in this study.

The sample consisted of both leading doctors and ordinary practitioners. Leading doctors (total n= 122) included all professors of obstetrics and gynaecology (called gynaecology in this article) and paediatricians in university hospitals and specialists in hospital gynaecology or paediatric units. Names and addresses were obtained from the doctor's association and from the hospitals. A random sample was selected, consisting of gynaecologists, paediatricians and general practitioners in active practice whose main work was not in private practice and who were registered in the nationwide Central Register of Health Professionals. For paediatricians, half (n= 252) were picked randomly and then the leading paediatricians were excluded, resulting in 208 in our final sample. For general practitioners, a sample of similar size (n= 250) was randomly picked and then those with a second speciality in paediatrics, gynaecology or genetics were excluded, resulting in 245. For gynaecologists, in six counties gynaecologists were picked in the same way as paediatricians (n= 52). In the six other counties, we had recently carried out a survey of half of the gynaecologists (every second from a list arranged by postal code), and in this survey the other half was used (n= 124). The survey was mailed in November 1996, and after a reminder 74% responded.

Because of the expected variability in answers to different questions, no formal power calculations were made before the study. For leading doctors, all available were included, and the size of the sample of ordinary practitioners was determined by the resources available as well as by the number of practitioners in the country. A sample size of 200 has an adequate power to find a 1.3 times difference in a baseline occurrence of 60%. Confidence intervals for percentages were calculated as described by Gardner5. Statistical testing of differences between the groups was done using the χ2 test. Ordinary paediatricians were chosen for the reference group because it was the largest of the specialist groups.

RESULTS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. METHODS
  5. RESULTS
  6. DISCUSSION
  7. References
  8. Appendix

Some background characteristics of the doctors are shown in Table 1. Leading doctors were more likely than ordinary doctors to be older and male. Most had children, but typically their youngest child had been born 10 years or more ago (i.e. at the time when untargeted fetal screening was not yet widespread in Finland2).

Table 1.  Background characteristics of the doctors by group. Values are given as % (95% CI). GP = general practitioner.
 LeadingOrdinary 
 Gynaecologist (n= 43)Paediatrician (n= 59)Gynaecologist (n= 121)Paediatrician (n= 155)GP (n= 166)
  1. *Includes those (and those whose wives) are currently pregnant.

  2. One or more of the following: genetic counselling, pregnant women, maternity centre, healthy child clinic, newborn care, care of disabled, abortions.

Women28(15.41)34(22.46)49(40.58)63(55.71)45(37.53)
Age <50 years35(21.49)27(16.38)63(54.72)73(66.80)74(67.81)
Own children born19(7.31)15(6.24)39(30.48)42(34.50)34(27.41)
>10 years agoast;     
Main work in hospital10090(82.98)81(74.88)71(64.78)11(6.16)
Work relevant to fetal screening88(78.98)90(82.98)97(94.100)84(78.90)55(47.63)

Views of doctors concerning fetal screening in general were measured by listing various prenatal or carrier screening tests and asking which of them should be available to all pregnant women (after it is technically possible) (see Appendix 1). Most doctors, regardless of speciality or group, said that serum screening for Down's syndrome and ultrasound screening for malformations should be available (Table 2). Very few (from 1% to 5% in different groups) said they should not be available, and the rest could not say or did not answer the question.

Table 2.  Percentage (95% CI) of doctors saying that the following prenatal or carrier screening tests (CST) should be available for all pregnant women. GP = general practitioner; AGU = aspartylglucosaminuria; INCL = infantile neuronal ceroid lipofuscinosis.
 LeadingOrdinary 
 Gynaecologist (n= 43)Paediatrician (n= 59)Gynaecologist (n= 121)Paediatrician (n= 155)GP (n= 166)
  1. *Currently in wide use as screening.

  2. Currently in wide use for families with positive family history.

Down serum screeningast;84(73.95)90(82.98)84 (77.91)87 (82.92)79 (73.85)
Ultrasound screening for malformationsast;91(82.100)92(85.99)95 (91.99)93 (89.97)80 (74.86)
Fragile-X (CST)37(23.51)48(35.61)36 (27.45)49 (41.57)34 (27.41)
Fetal cells26(13.39)19(9.29)26(18.34)23 (16.30)14 (9.19)
AGU (CST)37(23.51)54(41.67)39 (30.48)61 (53.69)37 (30.44)
INCL (CST)30(16.44)63(51.75)27 (19.35)63 (55.71)33 (26.40)

Fragile-X, aspartylglucosaminuria and infantile neuronal ceroid lipofuscinosis are inherited diseases that cause mental retardation in early childhood. At the time of the survey there were experimental programmes for fragile-X and aspartylglucosaminuria screening in some local areas in Finland. Overall doctors were less sure of these screening tests and more also said they thought they should not be made available widely. Paediatricians, both leading and ordinary, more often hoped these tests would be available for all pregnant women. But even among this group, 12% and 17%, respectively, said that these screening tests should not be introduced. Very few doctors took a stand on the option of taking ‘fetal cells from mother's blood sample’ and 72% choose the alternative ‘cannot say’.

The questionnaire included a special section on serum screening alpha-fetoprotein/human chorionic gonado-trophin for Down's syndrome, defined as an example of fetal screening. The first question included four claimed advantages of serum screening (Appendix 1). The most often chosen advantage was prevention of the birth of disabled children (Table 3). In addition, the arguments ‘parents can adapt to the birth of a disabled child already during pregnancy’ and ‘societal costs for caring for disabled persons decrease’ were considered important advantages. For the argument ‘screening increases women's motivation to attend prenatal care’, equal proportions of respondents considered it to be an important advantage (23%) and not to be true (22%). The opinions of different specialists were relatively similar.

Table 3.  Doctors' opinions of Down's serum screening, considering claims to be an important advantage or not true*. Values are given as % (95% CI). GP = general practitioner.
 LeadingOrdinary 
 Gynaecologist (n= 43)Paediatrician (n= 59)Gynaecologist (n= 121)Paediatrician (n= 155)GP (n= 166)
  1. *The rest chose ‘not an important advantage’, ‘cannot say’, or did not answer.

Prevention of disabled children     
 Important advantage79(67.91)80(70.90)78(71.86)76(69.83)79(73.85)
 Not true5(−2.12)04(1.7)3(0.6)4(1.7)
Parents can adapt     
 Important advantage51(36.66)66(54.78)65(57.73)60(52.68)65(58.72)
 Not true12(2.22)7(0.14)11(5.17)13(8.18)12(7.17)
Decreases societal costs     
 Important advantage54(39.69)53(40.66)53(44.62)36 (28.44)49 (41.57)
 Not true7(−1.15)2(−2.6)7(2.12)11(6.16)7(3.11)

In a similar question on claims about disadvantages of Down's syndrome screening, two received wide support: ‘false positive findings cause worry for women’ and ‘screening causes pressure for late abortions, which are emotionally difficult for women’(Table 4). Emotional difficulties for doctors caused by late abortions were considered an important disadvantage by a fourth of the doctors, but another fifth thought the argument not to be true. Gynaecologists did not more often choose the last-mentioned option. This was true even when the analysis was restricted to gynaecologists whose current work included performing abortions (n = 144). There was a correlation between the proposed highest limit for allowing an abortion and considering it emotionally difficult for doctors: the lower the suggested limit, the more often abortion was considered an important disadvantage. Most doctors said the argument ‘attitudes towards people with disabilities become more negative’ was not true, but a fifth of ordinary paediatricians and general practitioners said it was an important disadvantage. In a space for comments, 11 doctors (2%) had written disadvantages that showed that for them Down's screening was a serious medical or moral problem.

Table 4.  Doctors' opinions of Down's serum screening, considering claims to be an important disadvantage or not true. Values are given as % (95% CI). GP = general practitioner.
 LeadingOrdinary 
 Gynaecologist (n= 43)Paediatrician (n= 59)Gynaecologist (n= 121)Paediatrician (n= 155)GP (n= 166)
  1. *The rest chose ‘not an important disadvantage’, ‘cannot say’, or did not answer.

Worry due to false positives     
Important disadvantage74 (61.87)75 (64.86)73 (65.81)83(77.89)75(68.82)
Not true2 (−24)2 (−2–6)3 (0.6)05(2.8)
Late abortions stressful for women     
Important disadvantage44 (29.59)51 (38.64)47 (38.56)56 (48.64)57 (49.65)
Not true7 (−1–15)9 (2.16)12 (6.18)8 (4.12)10 (5.15)
Late abortions stressful for physicians     
Important disadvantage12 (2.22)25 (14.36)20(13.27)24(17.31)31 (24.38)
Not hue26 (13.39)14 (5.23)22(15.29)17(11.23)15 (10.20)
Attitudes towards disabled     
Important disadvantage12 (2.22)10(2.18)17(10.24)23(16.30)22 (16.28)
Not true63(49.77)51 (38.64)54(45.43)49(41.57)45 (37.53)

Very few doctors and none of the gynaecologists were categorically against abortion (Table 5). A small minority thought that Down's syndrome was not a sufficient reason to carry out an abortion. Most defined a latest gestational week for allowing an abortion because of Down's, and only a few thought that there should be no time limit. The median of the upper time limit given was 20 weeks (Table 5).

Table 5.  Table 5. Distribution of doctors by their attitude towards abortion in case of Down's syndrome*. Values are given as percentages. GP = general practitioner.
 LeadingOrdinary 
 Gynaecologist (n= 43)Paediatrician (n= 59)Gynaecologist (n= 121)Paediatrician (n= 155)GP (n= 166)
  1. *In your opinion, which gestational week should be the latest time to allow the abortion of a fetus with Down's syndrome?'.

  2. In testing statistical significance, other groups were individually tested against ordinary paediatricians (group ‘other, no information’ wasexcluded).†<0.05, ‡P < 0.001.

Does not accept abortion00023
Down's syndrome not good enough reason210394
Cannot say51972021
Certain limit8661846264
≥ 12 weeks07289
13–20 weeks5649554449
≤ 21 weeks30527106
No limit23325
Other, no information57353
TOTAL100100100100100

After specific questions on serum screening, further attitudinal questions on the ethics of fetal screening in general were asked. One of them was on ‘hereditary hygiene’(i.e. eugenics) (see Appendix 1). A fifth of the doctors thought that fetal screening was based or partly based on eugenic thinking, about half said it was not, and most of the other respondents could not say or chose the option ‘I do not know what eugenics is and cannot make a comparison’(Table 6). The opinions of different specialists were similar, but ordinary paediatricians and general practitioners more often did not take a stand.

Table 6.  Distribution of doctors by their responses to the question ‘Are current fetal screenings based on eugenic thinking?’. Values are percentages. GP = general practitioner.
 LeadingOrdinary 
 Gynaecologist (n= 43)Paediatrician (n= 59)Gynaecologist (n= 121)Paediatrician (n= 155)GP (n= 166)
  1. *In testing statistical significance, other groups were individually tested against ordinary paediatricians (group ‘Does not know, cannot say, no information’ was excluded).

Yes22112
Partly1617152120
No6159604842
Does not know, cannot say, or no information2122243036
TOTAL100100100100100

In an open-ended question, 35% gave reasons for considering that fetal screening was (partly) based on eugenic thinking. The reasons were formulated either positively (‘they are, but…’ 53% of reasons) or negatively (‘they are not, but…’, 42% of reasons). The reasons were partly the same as given for ‘no’ opinions, but were given a different meaning or conclusion. Forty-two percent of doctors who considered screening not to be based on eugenic thinking gave their reasons in the open-ended question. The most common reason (38%) was based on intention: eugenics is to improve a nation/race, fetal screening is to help families, decrease suffering and abolish diseases. The second most common reason (37%) was based on voluntariness: parents decide, not the society. The third reason was based on the target (a reason related to the first reason, 14%): ‘in eugenics the target is the race or nation, in screening the target is the family and the individual’.

Another ethical problem in the survey concerned screening for fetal sex in order to abort fetuses of an unwanted gender. When asked ‘In your mind, is abortion because of the fetus' sex acceptable?’, 69% considered it unacceptable. In clarifying the option ‘in some cases’(30% of doctors), the reason given was sex-linked diseases. Only one paediatrician thought it acceptable in certain cultures or countries if the ‘alternative is a population boom’.

DISCUSSION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. METHODS
  5. RESULTS
  6. DISCUSSION
  7. References
  8. Appendix

Different groups of doctors are likely to have very different theoretical knowledge of and practical experiences with fetal screening. Thus, one would have expected marked differences among different groups of doctors. However, the overall impression was one of similarity rather than divergence between the different specialist groups. This especially concerned purely attitudinal questions, such as those on abortions and eugenics. This similarity speaks for a common medical culture. It is probable that the doctors echoed the accepted medical truth which regards fetal screening as a matter of fact. Medical literature presents the new fetal screening techniques as advantages, and screening itself as a self-evident need that requires more accurate and feasible methods. Problems are acknowledged, but they are considered inevitable and as not overshadowing the benefits of screening. However, there was a minority of doctors who did not support screening and negative opinions on abortion in general did not explain the existence of this minority group as the numbers of doctors not accepting abortion was very low.

There is no comparative Finnish survey on lay people's views on the need for Down's serum screening, but the high uptake by pregnant women suggests either high acceptance or poor understanding of the procedure6. In two local surveys7,8 almost all women participating said they would again participate in serum screening in subsequent pregnancies, but those having had a (false) positive finding had much less interest. In a survey sent to a representative sample of Finnish mid-wives and public health nurses, the responses to the same question as in our survey showed a somewhat lower acceptance of serum screening: 79% thought that serum screening for Down's syndrome should be available for all pregnant women9.

The proportions of doctors hoping for new fetal screening tests were much lower than the proportions of those accepting the current screening tests. The severity of the condition screened cannot explain this because Down's syndrome is more benign than, for example aspartylglucosaminuria, which results in progressive mental retardation at an early age. The finding is likely to reflect trust in decision-makers (‘those tests in use must be so for a reason’) rather than personal judgement on the value of each test. Fetal screening tests have been introduced on the basis of experts' decisions and most doctors have not faced the need to judge the technical or health value of the tests. With the exception of screening for Down's syndrome, other types of screening were likely to be unfamiliar to most doctors; the question measured their attitudes towards wide use of screening tests. Another explanation for the reserved attitude may be the fear of eugenic ideology (‘improving the quality of the future generation’). Possibly screening for one or a few clearly defined medical problems is easier to distinguish from eugenics than a large number of tests for various diseases. Despite the very negative connotation of eugenics in its historical manifestations, a minority of doctors thought there was some relatedness between fetal screening and eugenic ideology. However, very few thought present screening procedures were totally based on eugenic ideology.

Most of our results are based on answers to ready-formulated questions rather than open-ended questions. We had carefully planned and tested the questions to avoid their being leading, and to make all options equally acceptable. This was especially critical for our question on eugenics, because even asking the question suggests that eugenics could be related to fetal screening. On the other hand, we started with a ‘no’ response option, asked for grounds for the response in an open-ended question and had an option for not being familiar with eugenics. These may have helped avoid unnecessary bias towards linking fetal screening and eugenics.

We had anticipated that leading doctors, more so than ordinary practitioners, would be in favour of fetal screening. They are first to pick innovations and in Finland they are also formally responsible for development work in their area. However, no such gradient was found.

The results on the suggested gestational age limits for abortion are puzzling. The Finnish law allows abortion because of ‘severe fetal illness or defect’ until gestational week 24, but at the same time the official dividing line between a birth and miscarriage is 22 weeks. Furthermore, one could question whether Down's syndrome qualifies as a ‘severe fetal defect’, because the severity varies notably from one child to another. Some of the doctors in the survey would allow abortion even at gestational ages beyond those defined in the law. The legal definitions of upper gestational age limits for abortion varies across countries10. Legal definitions are likely to be an important determinant of doctors' views of suitable limits.

Previous studies on doctors and fetal screening have focused on doctors' knowledge, on the way tests are offered or on counselling, or the target group has been clinical geneticians, who were not included in this study. For comparison, we found five studies11,15, and three11–13 specifically dealt with Down's syndrome, which was our prime example. About 90% of obstetricians in teaching hospitals in some areas in the UK agreed with the statement that if a reliable test were available to detect Down's syndrome fetuses, such test should be routinely available to all women11. This opinion parallels the opinions in this study, even though the test available is unreliable. According to another study12, half of UK obstetricians offered serum screening to all women, and anxiety caused by false positive results was a commonly encountered problem; a third said they offered or did not offer some fetal screening or diagnostic procedures because of outside pressures. In Ontario, Canada, 87% of family doctors and 90% of obstetricians offered Down's serum screening routinely to all pregnant women, but 22% recommended that the programme should be scrapped and 29% suggested changes13. In a Minnesota study in 199014, family practitioners who offered serum α-fetoprotein to detect neural tube defects had many concerns about the test. Most London general practitioners supported cystic fibrosis screening, but very few (3%) considered pregnancy to be the best time to do so15.

There are several surveys on the views of doctors on abortion in general or on selective termination because of a fetal disorder in particular. According to those studies10,16–20 which have dealt with Down's syndrome most doctors would terminate the pregnancy; 78% and 91% of French gynaecologists10,16, over 80% of British and Portuguese gynaecologists17 and around 70% of Canadian gynaecologists18 would terminate a pregnancy if the fetus had Down's syndrome. In a Danish study, 93% of gynaecologists and 76% of paediatricians would accept an abortion at week 21 for a Down's syndrome fetus19. According to Green's20 study, many British gynaecologists (3%), as Finnish gynaecologists in this study, did not consider Down's syndrome a sufficient reason for an abortion, but compared with Finnish gynaecologists, they were more willing to carry out an abortion in late pregnancy. UK law allows terminations beyond gestational week 24 for serious conditions.

In conclusion, our study suggests that doctors have accepted fetal screening because screening tests have been presented as the standard of care, but when probed many of them acknowledged controversies and problems around fetal screening. Spreading new ideas, either promoting or opposing fetal screening, via both leading and ordinary doctors is likely to be easy because of the responsiveness of doctors in this delicate and controversial issue.

Acknowledgements

This study is a part of a project, ‘The development of fetal screening in Europe: The past, the present and the future’. It was financially supported by EU contract No. BMH4-CT96-0740, by the National Research and Development Centre for Welfare and Health and by the Academy of Finland. We thank the members of the EU group for their help in constructing the questionnaire, and E. Vuori for help with the coding.

References

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. METHODS
  5. RESULTS
  6. DISCUSSION
  7. References
  8. Appendix

Appendix

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. METHODS
  5. RESULTS
  6. DISCUSSION
  7. References
  8. Appendix

APPENDIX 1. (AN ENGLISH TRANSLATION OF QUESTIONS USED IN THIS STUDY)

9. Which of the following fetal screening or carrier testings should be available for all pregnant women (after it is technically possible)? (For all items, options ‘should be available’, ‘should not be available’, ‘cannot say’ were given):

1. serum screening for Down's syndrome, 2. ultrasound screening for structural abnormalities, 3. fragile-X, 4. AGU, 5. INCL, 6. fetus cells from mother's blood sample, 7. other, what? Possible clarifications.

10. Many advantages of serum screening for Down's syndrome have been suggested. Please, mark for each of the following arguments what you think about it. (For all items, options ‘important advantage’, ‘not essential advantage’, ‘cannot say’, ‘I think the argument is not true’, were given):

1. births of children with disabilities can be prevented, 2. parents can adapt to birth of a child with disabilities already during pregnancy, 3. screening increases women's motivation to attend prenatal care, 4. societal costs for caring for persons with disabilities decrease, 5. other, please describe.

11. Many disadvantages of serum screening for Down's syndrome have been suggested. Please, mark for each of the following arguments what you think about it. (For all items, options ‘important disadvantage’, ‘not essential disadvantage’, ‘cannot say’, ‘I think the argument is not true’, were given):

1. screening takes time and resources from other maternity care, 2. attitudes towards people with disabilities become more negative, 3. false-positive findings cause worry for women, 4. screening creates pressure for late abortions, which are emotionally difficult for women, 5. screening creates pressure for late abortions, which are emotionally difficult for physicians, 6. other, please describe.

13. In your mind, which gestation week should be the latest time to allow the abortion of a fetus with Down's syndrome?

1.— gestation week, 2. no limit, 3. Down's syndrome is not a good enough reason to abort, 4. I do not accept abortions at all, 5. cannot say, 6. other, please describe.

18. Hereditary hygiene (i.e. eugenics) was a prevalent way of thinking in many countries in the beginning of this century. In your opinion, are current fetal screening procedures based on this way of thinking?

  • 1
    No, because
  • 2
    Yes, because
  • 3
    Partly, because
  • 4
    I do not know about eugenics and cannot make a comparison
  • 5
    Cannot say
  • 6
    Other, please describe

19. In your mind, is abortion because of a fetus's sex acceptable?

1. no, 2. yes, 3. in some cases, in which?, 4. cannot say, 5. other, please describe.

21. If you have proposals for improving the provision of fetal screening, please write them here.