Perspectives of new reproductive and diagnostic techniques among biologists and physicians, social scientists and ethicists

Evan&rlml,M.M.kgee#andJl?M.GeraedV

'Department of Education, University of Amsterdam, Amsterdun, ZFOundation of Clinical Genetics south-E;rss Nethukads, Maastricht, The Netherlands

ABSTRACT

INTRODUCTION

Medical discavcrics in the field of reproductive medicine such as in viko fertilization 0 embryo

ayoprcscrvation and thawing, oocyte and embryo donation, inmcytopfasmic sperm injection (ICSI), microswgid epididym?l spcrm aspiration (MESA) and testicular sperm extraction (TESE), have received much attention. Also, in the field of antenatal diagnosis, important technological developments such as amniocentesis, chorionic villus biopsyr ultrasound diagnosis, the triple test, prcimplantation clbgno& and f d dl sorting, have reccivcd much media cowrage. If wc place reproductive medicine and antenatal gcnetic diag- nosis under the hading ofreproductive achwlogy we an condude that chis whole field is under great public attention. This attention is iccompvlied by much criticism, and social and legal acceptance of the new techniqu+s o h tlkts much do-

In this compliatcd process of introduction and acccptmx several groups arc involved, such as the scientists and the physicians who develop and introduce these techniques, the ethicists and social scientists who discuss the ethical and social sides of the developments, special interest groups, for instance the pro-life movement and ideological or religiously motivated groups, i.e. the fcminist

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New rtptvductiue technology van Balen et al.

movements and the churches'". It appears that new technology which is associated with the beginning or the end of life receives a lot of attention and leads to extensive discussion2. The discussion about new techniques takes place in several arenas: scientific conferences, governmental advisory committees, and especially in the modem mass media). Initially when new techniques are introduced their character and their consequences are often difficult to understand; a lvge gap exists between scientists and the lay public regarding the meaning, advantages and disadvantages of new inventions and developments4. The knowledge and interests of those directly involved in research are ofien far removed fiom the scenarios and images that are displayed in the popular media'. In the field of reproductive technology, fears about 'Frulkenstein' and 'clones of Hitler' (fiom the film "The Boys from Bnzil" based on the novel by Ira Levin) are easily raised. Therefore, it is important that the general public receives adequate and correct information about these techniques, and about the social consequences and the ethical aspects of the techniques. Physicians and biologists, as well as social scientists and ethicists are important in the transfer of this knowledge.

Obviously the biomedical professionals are primarily concerned with the biological and medical aspects of the techniques. In a study among medical researchers it was reported that their con- tacts with the press were mainly positive and that the media covtragc a l l 4 the public to gain more understanding of their research topic. However, the improvement of the irmge of the profession was perceived as the main advantag$. O n the negative side, deadlines, editorial changes and lack of space, may result in distorted stories that are not considered as 'helpf~l'~. Also, pressures from the popular media are sometimes strong enough to entice scientists into giving interviews before publication in scientific journals7.

Social scientists and ethicists play a role in influencing public opinion about new reproductive techniques especially concerning the ethical aspects and social consequences. Furthermore. because they do not belong io the group which is involved in the development or application of the repro- ductive techniques itself, their contribution in the discussion may be perceived by the public as less 'guided by professional interests. However, con- nections with the popular media form an important

part of the academic capital of social scientists*, and the urge for media-access may influence their position, presumably in a more critical way

Serious criticism has been raised by social scientists and ethicists regarding the development of reproductive technology. Especially among feminist scholars, technology development is fiequently seen as male dominated and not in the interest of women, but in the interest ofthe phar- maceutical industrYg-'*. Also, the new reproductive technology o k n encounters ethical and religious objections, that are assS0ci;lted with the protection of the begmnhg of l ie or the definition of 'pcrson- hood' or a 'human being"s15. Furthermore, genetic diagnosis has been criticized because it postpones feelings of motherhood and affection towards the child, until a successll test result is available'9 In addition, the idea that more possibiIities widen the choices for women has been questioned. It has been argued that the existence of new techniques creates a social climate that forces women to use them". On the other hand, a large number of ethicists'"', and even feminists- take a more positive view towards the new opportunities that reproductive technology offers. This short overyiew indicates the importance of social scientists and ethicists in illuminating the different viewpoints regarding reproductive technology and in focusing the public discussion in this field. In this paper we report differences and similari-

ties in opinions about a wide range of new and future techniques, between the scientists who are working in the forefiont of the new techniques, and social scientists and ethicists. We will pay attention to their expectations about the feasibility of the techniques, the importance of the various tech- niques in terms of hture demand, and its ethical value. Also, we will compare their assessment of public social acceptance of the new techniques.

This study has been carried out in the Netherlands; Dutch society is rather liberal regarding some ethical issues Concerning birth and death. However, Dutch laws and regulations about reproductive technology can be characterized as somewhere between that of the more liberal position of the UK and that of the more restrictive position of Germany. 1x1 regard to reproductive technology, Dutch society is not much different from other Western countries, therefore the findings and conclusions of this paper may be generalizable in this respect.

Journal of Psychosormtic Obstetrics and Gynecology 105

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METHODS

Sample

the Netherlands. First, a selection was made among biologists and physicivls on the basis of their invohmnmt in rrsevch in the field ofrrproductive technology or of being among the first in the application ofncw techniques on patients. Second, a selection was made among social scientists, psychologists and cthkias based on their how- ledge and interest regvding new reproductive technology; some leading members of patient o’Buliz?tionswnr incorpamed in this stlection. Mostmcmbenofthissecondseleaionwcrr;Ictive participants in the public debate concerning reproductive m c d i i and genetic diqnods. They contributed to television and ndio prognms and published articles in ncwspqm and magazines regvdingthcsesubjccts. In this respea, this group

the professionals in the biomedic?l world and the lay public.

The sample consisted of two groups of scientists in

can be considard as the medi?tingkyerbctwccn

Procedures

First a pilot study was carried out to test whether the reproductive and diagndc techniques that

adequate and rclcvan~ This pilot study was done among h biologists and physiains, and five social scientist and ethicists. Next a questionnaire was sent to a panel of 27 biologists and physicks and a panel of 31 sodid scientists, ethicists, and 1eding members of patient organizations. The biomedical panel was intended to rrprrsent individuals with a profwiod interest in the techniques. The d- ethical panel represented schdvs who wen doing research regarding the s t u d y of the social,

members of patient organizations were also included in the SecOIlcl panel bec;luse they were thought to have knmlcdgc about the social acceptability of the new techniques. The two panels represented most of the experts in both areas of discipline in the Netherlands. The questionnaires were answered during summer 1996 and consisted of open questions, c l o d questions, and semi-open questions. R e hture d~lopments , fbrrclst periods of 5 and 2Oyeus wcrt used. The response rate was 61% in the biomedical panel and 77% in

were discussed, and the kind of questions WtTt

psychologic;llorethic?l?specrrofthisfield.Lc2ding

the soci?l-ethical panel. The biomedical pane1 consisted of nine biologists and scvcn medial doctors, the soci?l-cthial panel consisted of six psychologists, four sociologists, six ethicists, and eight leading members of patient organizations.

Definitions and measures

The following new techniques were d in this study: pimpiantation genetic dbposis, fetal cell

oocytt selection, uterus lavage, prc-implult;lton genetic theram selective abortion in multiple pregnancies, and embryo-multiplication. In p- impkntoriongcnrtir diqpsis one or two of the cells of the pre-anbryo, created by IW, arc studied for p~& dcfxts, or the scx in the case of Xlinkcd diseases. Only un&ected pre-embryos are implanted. hwdsmtiqg, bIood is collected h m the mother, and the fetal CJk arc separated and studied fbr genetic Mi . This my be arried out for screening purposes or for dkgnostic adysis. In semen #pcrrorion the purpose is to separate X andY spermatozoa or spenn carrying, and not unying, genetic d d i In ringc spam sektion the objective is to select the sperm cells individ+. oocytc &don concerns the same object regding f d e

sortin& semen selection, single spum seleaion,

gametes. In #taw kwge, the uterus is flush4 fbllowing natural conccptia The aim is to collect the prr-embryo atxi study it repd ing specific d & c t s . h ~ l c r t i o n g ~ i s t h e p o s s i b l e ~~ofgwet icm?ttr i? l inprt-anbryoJwith p d c ddicff sdadivr w M multiple p g n u n k , concerns the tMsfer of many prc- embryos following IVF. Next the growing fetuses arc invcstigrted, and one or two healthy ones arc pmervcd Eidqw-mWbh is t&c multipli- cation or cloning ofpre-embryos in order to have more oppommities fbr fesevdl regding genetic diseases and a greater possibility to transfer a healthy prc-unbryo. The biomedical panel was asked to judge thee

various techniques with regard to the present feasibility, the faibility in 5 years, and the fcasi- bility in 20 yurs. Feasibility was defined as the possibility of routine application of each technique, without taking into ?ccount governmental or other restrictions rcgading the application. Fevibility was measured on a +point sale, with the score 1 defined as ‘absolutely not feuible’, and score 4 as ‘absolutely feuible’. Both panels were askd to

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evaluate the potential importance of the new techniques. Potential importance w a s defined as the possible future demand, and was measured on a 5- point scale with the score 1 defined as ‘absolutely not important’ and the score 5 was ’very important’. Next, the ethical evaluation of the techniques was measured by asking both panels about their private ethical judgement of the techniques, with the minimum score 1 meaning ‘reject absolutely‘ and the maximum score 5 meaning ‘approve very much‘. Finally, social acceptance of the techniques was investigated by asking the panels to assess this on a 5-point scale, in which the score 1 was defined ‘absolutely not socially acceptable’ and the score 5 was defined as ‘very much socially acceptable’. Regarding personal ethical evaluation, social accep- tance and potential importance, two routine techniques in the field of genetic diagnosis, amnio- centesis and chorionic villus biopsy, were added for comparison. In order to evaluate the results of this study, the participants were asked to assess their own knowledge and expertise and emotional involvement in this field of research. Knowledge and expertise were measured on a 4-point scale, with the score 1 meaning ‘absolutely no expertise’, and 4 ‘very good expertise’. Also involvement was measured on a 4-point scale with 1 defined as ‘not or hardly involved’ and 4 defined as ‘very strongly invoked’.

RESULTS

Ekpertise and involvement

The members of the biomedical panel assessed their own expertise in the field of the new techniques as rather well developed, the mean score

was 3.19 on the 4-point scale. The social scientists and ethicists reported, as can be expected, less knowledge in this field; a mean score of 2.54. Regarding the interest in the new techniques, both panels were rather involved, with a mean score of 3.19 on the 4-point scale for the biomedical panel and of 3.13 for the social-ethical panel.

Feasibility

At present, only pre-implantation genetic diagnosis and selective abortion after multiple pregnancies were considered as technologically feasible. Both techniques remain the most feasible when a forecast is made 5, and 20 years ahead, respectively However, the feasibility rates for the other techniques are increasing: fetal cell sorting is thought to become very feasible (Table 1).

Potential importance

The potential importance of the techniques with regard to their applicability is shown in Table 2. Both the biomedical and the social-ethical panel assessed the existing routine techniques, amnio- centesis and chorionic villus biopsy, as the most important ones. The members of the biomedical panel assessed fetal cell sorting as almost equally important to these two widely applied techniques. However, within the social-ethical panel this technique was evaluated as significantly less important (t =2.08, p = 0.046). The biomedical panel assessed single sperm selection, and pre- implantation genetic diagnosis as neither important nor unimportant. Also, these two techniques were rated as significantly less important by the social- ethical panel (t = 2.24 ,~ = 0.033; t = 2.11,~ = 0.043,

Table 1 Feasibility of reproductive techniques* (biomedid panel)

AP- In5yearJ In 20 yean Mean (SO) Mean (SO) Mean (SO)

Re-implantation genetic diagnosis Selective abortion Oocyte selection Uterus lavage Embryo multiplication Fetal cell sorting Semen separation Sin& sperm selection Pre-implantation therapy

3.56 (0.63) 3.81 (0.40)

213 (1.25) 2.50 (1.26) 2.00 (0.76) 2.73 (0.80) 1.93 (1.16) 2.60 (1.18) 1.87 (0.83) 2.94 (0.93) 1.67 (0.90) 2.38 (0.81) 1.40 (0.91) 2.25 (0.86) 1.31 (0.48) 2.19 (0.83)

3.43 (0.85) 3.64 (0.84) 3.94 (0.25) 3.93 (0.27) 3.00 (0.97) 2.87 (0.92) 3.07 (0.96) 3.56 (0.63) 2.88 (0.72) 2.67 (0.90) 2.87 (0.83)

*range 1 - 4 1, absolutely not feasible; 4, absolutely feasible

Journal of Psychosomatic Obstetrics and Gynecology 107

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4 oe k a I R.

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Table 2

' Potential

impo

rtan

ce, e

thic

id ac

cept

abiit

y and so

cial a

ccep

tanc

e of r

epro

duct

ive t

echn

ique

s po

lrntirr

l&np

lwtam

+ %

kal

du

atw

n+

* So

cial

aacp

hncc

*++

Biom

edica

l So

ctrGC

diircl

l Bi

ormd

icat

Socia

l-Cikk

cJ

..

B&

medic

al 2h

d-du

d lw

a~(S

D)

Mea

n(SD

) Si

gn$c

am

Mca

n(SD

) M

mn(

SD

) Si

gnjF

ancc

lM

cM(S

D)

Mca

n(S

D)

Sign

jFon

cc

Exist

ing t

echn

ique

s am

nioc

ente

sis

chor

ioni

c vi

ilus b

iops

y N

ew te

chni

ques

fe

tal cell s

ortin

g pr

c-im

plan

tatio

n ge

netic

singl

e qxr

m selection

semen

sepa

ratio

n oo

cytc selection

uterus la

vage

pr

e-im

plan

tatio

n th

erap

y se

lect

ive abortion

embr

yo m

ultip

licat

ion

dir

gnos

is

4.56

(0.63

) 4.4

4 (0

.89)

4.25

(1.3

4)

2.94

(1.18

)

3.00

(1.41

) 28

7 (1

.55)

2.6

0 (1

35)

250

(1.1

0)

253

(125

) 23

3 (1

23)

2.40

(1.2

4)

435

(0.59

) 4.

25 (0

.72)

3.26

(1.4

5)

221

(0.8

5)

212

(0.7

8)

2.33

(0.8

4)

2.37

(1.01

)

1.89

(1.1

0)

2.37

(1.1

2)

205

(0.7

6)

1.79

(1.0

3)

NS

NS

0.04

6 0.0

43

0.03

3 N

S N

S N

S N

S N

S N

S

4.81

(0.40

) 4.6

9 (0

.48)

4.75

(0.7

7)

4.50

(0.52

)

4.37

(0.8

1)

4.40 (0.83)

43

(0.86

)

3.44

(121

)

288

(1.20

)

3.81

(1.42

)

2.94

(0.85

)

4.35

(0.6

)

3.83 (

0.94

) 3.63

(0.8

8)

3.83

(0.83

) 3.83

(0.9

4)

246

(125

)

4.29

(0.6

9)

3.83

(0.78

) 3.1

7 (1

.19)

292

(1.1

4)

217

(1.0

3)

0.015

(0

.W

0.00

2 0.001

0.04

8

NS NS

0.01

9 NS

(0.0

59)

(0.0

62)

4.50

(052

) 4.4

4 (0

51)

4.19

(1.1

1)

3.63 (0.89)

337 (1.09)

3.27 (1

22)

338

(0.7

2)

250

(0.7

3)

333

(1.1

8)

257

(1.09

)

231

(1.0

1)

4.21

(0.41

) 4.

25 (0

.44)

3.23 (0

.92)

3.

04 (0

.93)

2.95

(0.7

9)

290 (0.83)

3.00

(0.9

5)

225

(0.9

0)

1.95

(0.9

0)

276 (0.83)

238

(0.7

7)

(0.0

56)

NS

0.00

6 (0

-0S.

l)

NS

NS

NS

0.024

N

S NS

NS

* Ran

ge 1-

5: 1,

abso

lute

ly no

t im

porta

nt; 5

, very

impo

rtant

+*

Rang

e 1-5:

1, a

bsol

utely

re

je 5,

very m

uch a

ppro

ve

+** R

ange 1-

5: 1,

abso

lute

ly no

t soc

ially

acce

ptab

le; 5

, very

muc

h soc

ially

acce

ptab

le

E. I P a a l-

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New rtpductiw technology wn Balcn et al.

respectively). The biomedical panel considered all other techniques, semen separation, oocyte selection, uterus lavage, pre-implantation genetic therapy, embryo multiplication, and selective abortion following multiple pregnancies, as relatively less important a mean score below 3.00, but above 2.00. The social-ethical panel judged almost all these techniques as less important than the biomedical panel, though thc Merences did not reach a significant level.

Ethical assessment

The biomedical panel assessed most new techniques as ethically acceptable, though pre- implantation therapy only just so. Only regarding embryo-multiplication and selective abortion following multiple pregnancies the mean score was just below 3.00 (neither acceptable nor unaccep- table). Acceptance levels in the social-ethical panel were consistently lower. In particular, fetal cell sorting, judged about equal in importance to amniocentesis and chorionic villus biopsy by the biomedical panel, was assessed as a substantially less acceptable method by the social-ethical panel (t = 3.24, p = 0.002). Also, the ethical acceptability of amniocentesis, single sperm selection, and pre- implantation diagnosis was rated significantly lower by the social-ethical panel than by the biomedical panel (see Table 2). It is interesting to note that pre- implantation genetic therapy was rated by the biomedical panel as a technique on the positive side of the acceptable-unacceptable continuum (mean score 3.44), but rated by the social-ethical panel on the negative side of this continuum (mean score 2.46).

Social acceptance

The biomedical panel expected new techniques to be more easily accepted by society than the social- ethical panel. For all the techniques mean scores were lower in the social-ethical panel. Regarding fetal cell sorting and uterus lavage the differences in the evaluation of social acceptance were significant (t=2.91, p=0.006; r=2.35, p=O.O24, respec- tively). Amniocentesis and chorionic villus biopsy were thought to be acceptable techniques in both panels. According to the biomedical panel, f e d cell sorting was also considered quite acceptable,

however, the evaluation of social acceptance in the social-ethical panel was rather reluctant. Pre- implantation genetic therapy, selective abortion following multiple pregnancies and embryo multiplication are perceived by both panels as more or less unacceptable (mean score below 3.00) (See Table 2).

If the ethical considerations of the panel- members were compared with their assessment of the public’s ethics, both panels displayed a more ‘liberal’ point of view than society at large. The biomedical panel-members perceived social accep- tance of all techniques, except uterus lavage and selective abomon, as sigdcantly more restricted than their private opinion. Also, the social-ethical panel members expected significantly less social acceptance of fetal cell sorting, sperm selection, semen separation, oocyte selection, pre-implan- tation diagnosis and selective abortion, than their own acceptance.

DISCUSSION

It is supposed that the introduction and application of new techniques in reproductive medicine and genetic diagnosis is influenced by both the profes- sionals concerned, and by intermediates from social science and ethics. In this study a biomedical and a social-ethical panel were investigated in order to measure the attitudes of both groups. Though most experts in this field in the Netherlands were invited to participate, not all answered the questionnaires. Howcver, we have no indication of a systematic pattern of drop-out.

Most results are clear and consistent. Regarding the future expectancies of the new techniques it is supposed that all techniques will become more feasible. Homer , only one new technique, fetal cell sorting, is expected to become fully applicable in 20 years. In addition, at present pre-implantation genetic diagnosis and selective abortion following multiple pregnancies are judged as fully applicable.

It is a consistent finding that the social-ethical panel is more reluctant than the biomedical panel regarding the assessment of all investigated aspects of the new techniques: the potential importance, the expected social acceptance, and the ethical acceptability of new techniques. Of course, the assessment of these three aspects has some relation- ships. The ethical assessment may be associated with the importance of a technique: with important

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techniques that may benefit marly patients, ethical hindrances may be overruled easier. Also, the awn

Society in which one lives.

are obvioaq and o h put forward in this rnrpect ~ s o c i ? l s d e n t i s t s d e t h i d s t s p e i n ~ i n d questions d ethical considerations, and might therefore be more inclined to question technological solutiom than biologists and physicians. Because ofthis bias, and also because they know less about the discussed ttchniques than the rrsevchers themselves, social scientists and ethicists may be unjustly &aid about negative e&ctsandconsequ~ormaywronglypcrctivt that potentid gains do not outwdgh the costs. Second, pro&nafs in the field may be 'blinded' by the technological possibilities and opporwlitics (the 'Frurkcnsain' or 'rnad doctor' c&ct, as it is displayed by the mass media and the best-relling novels by Robin Cook), and may not suf6cicntly take into account the disadvmtap, negative side- effiar, and psychoIogiiaI burdm of the treatment

because of their discipline, have a more accurate insight into possible negative &kc& on individuals and society

These two brod explanations may both have significance but arc hard to prove Hawever, an indication of the validity of these explanations may be that the two techniques, which encountcT the greater dissensuJ betwcen the panels carry a vcry heavy ethical weight F e d cell sorting and pre-

ethical judgements generally do not develop completely separate tiom the judgement of the

What may be the causes or origins of this diffcrenct between both pan&? Two explanations

It is swppod that social scientists d ethicists,

implantation genetic diagnosis create a potential for 'eugenic selection' of humankind and both techniques h e the possibility to be applied on a wide scale.

Re-implantation genetic diagnosis is, besides b e i i dinicaliy applied fbr specific genetic dkascs, already used for chmmosomrl scrrming of the pre- embryos of older women hniqg P1 and may potentially be used in all IVF and ICSI treatments. Fed cell s o h g may even be offied to all pregnant women, or to pregnant women above a certain age. Ofcourse scmning and selection carry many negative connotations such as, some Iivcs arc worth less than others, and that mankind can be 'improved'. On the other hand the opinion is crqmssed that selection of n o d mi@, or sex select id, arc aaeptable desk that should not be outlawed. The great dflercnces between the biomedid and sociaI4cal panel regarding fet?l cell sorting and prc-implantation genetic diagnosis may be an indication that the hture debate in the field of reproductive and genetic medicine will be ?bout selection upcas. Though adsting pcrcep- tiom sct the stlndvds of debate", it is supposed that kndcdgc a n transfbnn these peneptions into new s i g n i 6 a n d . Therefore it is ncccsary that both biomedical professionals and social scientist and ethidsts keep communiating with each other.

ACKNOWLEDGEMENT The authors are gratefid to the Dutch fund 'Pneventiefbrzds', for the grant that made this study possible.

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t~~h~logi~~.Am]MnlLmv 1993;19187-231

Received 17 February 1998; accepted 14 August 1998

Journal of Psychosomatic Obstetrics and Gynecology 111

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