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I Med Genet 1995;32:799-804 Adolescents' opinions about genetic risk information, prenatal diagnosis, and pregnancy termination Marleen Decruyenaere, Gerry Evers-Kiebooms, Myriam Welkenhuysen, Jacqueline Bande-Knops, Veerle Van Gerven, Herman Van den Berghe Abstract Advances in genetics create increasing possibilities of diagnosing and preventing genetic disease. In most countries, the community is poorly informed about the role of genetic factors in human disease and about genetic testing and its social, emotional, and ethical implications. School education about genetics may improve this situation. Students are, of course, the ad- ults of the future and the potential users of the new genetic tests. To gain further insight into the perception of genetic risk of adolescents and their perception of the new genetic techniques and as a starting point for setting up an adequate in- formation campaign in Flanders, we as- sessed the opinions and beliefs of students with regard to health, genetic diseases, genetic risk, and genetic testing. A standardised interview and ques- tionnaire were administered within the scope of the two yearly medical check up of 166 fifth grade students. They were ran- domly selected from the group of all fifth grade high school students in seven differ- ent schools. This paper focuses on the attitudes of adolescents towards obtaining genetic in- formation, towards prenatal diagnosis and pregnancy termination. Adolescents in Flanders are interested in being informed about genetic risks and genetic diseases and in making use of prenatal diagnosis because they want to make informed re- productive decisions in the future and to be emotionally prepared for the birth of an affected child. They adopt a critical attitude towards pregnancy termination. The association between these attitudes and several relevant factors was in- vestigated. This showed significant cor- relations between some attitudes and general health related prevention, per- ceived burden of genetic diseases, the importance of the value "own health", the perceived role of society, and the regularity of religious practice. Some points for spe- cial attention were formulated with regard to information campaigns for adolescents. (JMed Genet 1995;32:799-804) In the past decades, there has been increasing awareness of the importance of genetic factors in the causation of human diseases. Many gen- etic diseases impose serious burden and suffer- ing, not only on the affected person but also on the parents and other family members. Ad- vances in genetics have created promising pos- sibilities for the diagnosis and prevention of genetic disease. In most countries, however, the community is poorly informed about basic genetics, about the role of genetic factors in human disease, and about genetic testing. As a consequence, only a minority of the potential clients find their way to a genetic centre. An- other consequence is that counsellees have difficulties in understanding the information given during genetic counselling and this may impede free, fully informed decision making. The genetic centres and the government should therefore do whatever possible to pro- vide information to the public. Professionals as well as patient organisations agree that school education on genetics should get special at- tention."A Students are the adults of the future and the potential users of the new genetic tests; thus they should be informed about genetic risks, genetic diseases, and genetic tests and about the existence of genetic centres. To en- sure that the information given during genetic counselling is fully understood, education about basic genetic facts and principles should be provided. The students should furthermore be sensitive to the values and norms which play a role in decision making about genetic problems. It is important to gain more insight into their spontaneous beliefs and opinions before setting up an educational or information campaign about genetics for adolescents. Are young people interested in genetic information and genetic risks? Are they prepared to receive in- formation about a subject which is not relevant for them at their age, namely reproductive decisions and genetic counselling? Do they real- ise that there are psychological and ethical implications of modern genetic technology? This paper focuses on the attitudes of high school students towards obtaining information about personal genetic risks, towards prenatal diagnosis, and pregnancy termination. We also examine the association of these attitudes with variables such as the attitude towards pre- vention in general, some basic knowledge of genetics, perceived severity of the disease, per- ceived self-concept of a child with a severe genetic disease or congenital malformation, perceived susceptibility to having such a baby, the perception of society's role regarding pre- Centre for Human Genetics, University of Leuven, UZ Gasthuisberg, Herestraat 49, 3000 Leuven, Belgium M Decruyenaere G Evers-Kiebooms M Welkenhuysen H Van den Berghe Department of Youth Health Care, University of Leuven, Belgium J Bande-Knops Medical School Health Service, University of Leuven, Belgium V Van Gerven Correspondence to: Dr Evers-Keibooms. Received 6 December 1994 Revised version accepted for publication 9 June 1995 799 on March 30, 2020 by guest. Protected by copyright. http://jmg.bmj.com/ J Med Genet: first published as 10.1136/jmg.32.10.799 on 1 October 1995. Downloaded from

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Page 1: MedGenet Adolescents' opinions about genetic risk ...Adolescents' opinions about genetic risk information, prenatal diagnosis, andpregnancy termination MarleenDecruyenaere, GerryEvers-Kiebooms,

I Med Genet 1995;32:799-804

Adolescents' opinions about genetic riskinformation, prenatal diagnosis, and pregnancytermination

Marleen Decruyenaere, Gerry Evers-Kiebooms, Myriam Welkenhuysen,Jacqueline Bande-Knops, Veerle Van Gerven, Herman Van den Berghe

AbstractAdvances in genetics create increasingpossibilities of diagnosing and preventinggenetic disease. In most countries, thecommunity is poorly informed about therole of genetic factors in human diseaseand about genetic testing and its social,emotional, and ethical implications. Schooleducation about genetics may improve thissituation. Students are, of course, the ad-ults of the future and the potential usersof the new genetic tests. To gain furtherinsight into the perception of genetic riskof adolescents and their perception of thenew genetic techniques and as a startingpoint for setting up an adequate in-formation campaign in Flanders, we as-sessed the opinions and beliefs of studentswith regard to health, genetic diseases,genetic risk, and genetic testing.A standardised interview and ques-

tionnaire were administered within thescope of the two yearly medical check upof 166 fifth grade students. They were ran-domly selected from the group of all fifthgrade high school students in seven differ-ent schools.This paper focuses on the attitudes of

adolescents towards obtaining genetic in-formation, towards prenatal diagnosis andpregnancy termination. Adolescents inFlanders are interested in being informedabout genetic risks and genetic diseasesand in making use of prenatal diagnosisbecause they want to make informed re-productive decisions in the future and tobe emotionally prepared for the birth ofan affected child. They adopt a criticalattitude towards pregnancy termination.The association between these attitudesand several relevant factors was in-vestigated. This showed significant cor-relations between some attitudes andgeneral health related prevention, per-ceived burden of genetic diseases, theimportance ofthe value "own health", theperceived role ofsociety, and the regularityof religious practice. Some points for spe-cial attention were formulated with regardto information campaigns for adolescents.

(JMed Genet 1995;32:799-804)

In the past decades, there has been increasingawareness of the importance of genetic factors

in the causation ofhuman diseases. Many gen-etic diseases impose serious burden and suffer-ing, not only on the affected person but alsoon the parents and other family members. Ad-vances in genetics have created promising pos-sibilities for the diagnosis and prevention ofgenetic disease. In most countries, however,the community is poorly informed about basicgenetics, about the role of genetic factors inhuman disease, and about genetic testing. As aconsequence, only a minority of the potentialclients find their way to a genetic centre. An-other consequence is that counsellees havedifficulties in understanding the informationgiven during genetic counselling and this mayimpede free, fully informed decision making.The genetic centres and the government

should therefore do whatever possible to pro-vide information to the public. Professionals aswell as patient organisations agree that schooleducation on genetics should get special at-tention."A Students are the adults of the futureand the potential users of the new genetic tests;thus they should be informed about geneticrisks, genetic diseases, and genetic tests andabout the existence of genetic centres. To en-sure that the information given during geneticcounselling is fully understood, educationabout basic genetic facts and principles shouldbe provided. The students should furthermorebe sensitive to the values and norms whichplay a role in decision making about geneticproblems.

It is important to gain more insight into theirspontaneous beliefs and opinions before settingup an educational or information campaignabout genetics for adolescents. Are youngpeople interested in genetic information andgenetic risks? Are they prepared to receive in-formation about a subject which is not relevantfor them at their age, namely reproductivedecisions and genetic counselling? Do they real-ise that there are psychological and ethicalimplications of modern genetic technology?This paper focuses on the attitudes of highschool students towards obtaining informationabout personal genetic risks, towards prenataldiagnosis, and pregnancy termination. We alsoexamine the association of these attitudes withvariables such as the attitude towards pre-vention in general, some basic knowledge ofgenetics, perceived severity of the disease, per-ceived self-concept of a child with a severegenetic disease or congenital malformation,perceived susceptibility to having such a baby,the perception of society's role regarding pre-

Centre for HumanGenetics, University ofLeuven, UZGasthuisberg,Herestraat 49, 3000Leuven, BelgiumM DecruyenaereG Evers-KieboomsM WelkenhuysenH Van den Berghe

Department of YouthHealth Care,University of Leuven,BelgiumJ Bande-Knops

Medical School HealthService, University ofLeuven, BelgiumV Van Gerven

Correspondence to:Dr Evers-Keibooms.Received 6 December 1994Revised version accepted forpublication 9 June 1995

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Decruyenaere, Evers-Kiebooms, Welkenhuysen, Bande-Knops, Van Gerven, Van den Berghe

vention of genetic disease, the importance ofvalues, and sociodemographic variables (sex,education, the occurrence ofgenetic diseases intheir family and in their environment, religiouspractice).

Subjects and methodsSUBJECTSThe subjects comprised 166 fifth grade highschool students. About 53% were following ageneral education and the others a technicaleducation; 45% were male and 55% female.The mean age was 16-74 years (range 16-20years).

PROCEDUREThe study was performed in cooperation withthe Medical School Health Service. The samplewas selected at random out of the list ofnamesof all fifth grade students from seven differentschools. In Flanders, every fifth grade studenthas to undergo a medical check up at theMedical School Health Service. The selectedstudents were invited to participate in a re-search project while waiting for their turn tobe examined. No one refused to take part. Aquestionnaire was administered during a stand-ardised interview (period January to May1993).

QUESTIONNAIRE AND INTERVIEWThe questionnaire and standardised face to faceinterviews were aimed at evaluating knowledgeand opinion about health problems, geneticdisease, perceived susceptibility to genetic dis-ease, and expectations with regard to genetictesting. The present paper only describes andanalyses the attitudes towards genetic in-formation, prenatal diagnosis, and pregnancytermination. These attitudes were measured bymultiple choice questions assessing the per-sonal intentions of the students with respect tosome hypothetical actions, namely (1) seekinginformation about genetic risks before re-productive planning, (2) undergoing prenataldiagnosis to detect serious disease or mal-formations in the fetus, and (3) undergoing apregnancy termination should the fetus have(A) a serious mental handicap, (B) a seriousphysical handicap, or (C) a serious geneticdisease (see Results section for more details).During the interview, the students could givearguments for their answers, as well as spon-taneous comments.The following variables were considered to

be potentially related to these attitudes.

General preventive attitudeThis was measured by the European Healthand Behaviour Survey (EHBS; 25 items),5which assesses the importance of a range ofdifferent activities for health maintenance, suchas cigarette smoking, alcohol consumption,breast self-examination, testicle self-ex-amination, and participation in screening andvaccination programmes. The students re-

sponded on a 10 point scale (1=low import-ance to health, 10 = great importance tohealth).

Basic awareness of geneticsThis was measured by 10 simple multiplechoice items about basic genetic terms andfacts (chromosome, gene, recessive, dominant,consanguinity ... ).6

Perceived severity of a handicap or a geneticdisease for the parentsThe students had to evaluate the perceivedburden for the parents of the birth of a childwith (A) a serious mental handicap, (B) aserious physical handicap, and (C) a seriousgenetic disease on a seven point scale (1 =notserious, 7=very serious).

Perceived self-concept of a child with a handicapor genetic diseaseThe subject had to rate how they thought achild feels when it has (A) a serious mentalhandicap, (B) a serious physical handicap, and(C) a serious genetic disease. The Health Ori-entation Scale7 (HOS), based on the semanticdifferential technique of Osgood, was used. Itconsists of 12 bipolar five point Likert scales:good-bad, afraid-unafraid, guilty-not guilty,ashamed-unashamed, weak-strong, shocked-relieved, sad-happy, marked-unmarked, un-able-able, angry-pleased, inactive-active,sick-healthy. We calculated a mean score persubject over the 12 items. A higher mean scorereflects more positive feelings.

Perceived susceptibilityThis was measured by two multiple choiceitems: (1) an estimation of the risk of a randomcouple in the population of having a newbornchild with a genetic disease or congenital mal-formation, and (2) an estimation of their ownchance of having such a baby. The studentscould choose one out of seven risk intervals:less than 1%, 1-2%, 3-5%, 6-10%, 11-20%,25%, and 50%.

Perception of the role of society in preventinggenetic diseasesThe students had to indicate whether theyagreed with the following two statements. (1)Society has to try to prevent the birth of ser-iously handicapped children by providing in-formation about genetics to the generalpopulation. (2) Society has to try to preventthe birth of seriously handicapped children bystimulating young couples to ask a medicaldoctor for information about increased geneticrisks before having children.

ValuesThe subjects had to rate the importance ofseven values on a seven point scale (1 = un-important, 7= very important). We selected

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Adolescents' opinions about genetic risk infornation, prenatal diagnosis, and pregnancy termination

Table 1 Personal intentions with regard to threehypothetical future actions (multiple choice questions)Would you ask a doctor for information about increased geneticrisks before your first pregnancy?

Certainly notProbably notI don't knowProbablyCertainly

3%25-6%15-2%39-0%17-1%

Would you use prenatal diagnosis when pregnant to detect seriousdiseases in the child

Certainly notProbably notI don't knowProbablyCertainly

6-1%19-5%11*6%44-5%18-3%

Suppose that in the future you and your partner are in one of thefollowing situations. Would you decide to terminate the pregnancy?

(A) A pregnancy with a child that is seriously mentallyhandicapped

No 45-7%I don't know 36-6%Yes 17-7%(B) A pregnancy with a child that is mentally normal, but

who has a serious physical handicapNo 62-2%I don't know 28-7%Yes 9-1%(C) A pregnancy of a child with a serious genetic diseaseNo 56-7%I don't know 29-9%Yes 13-4%

"having success in life", "pleasure and re-

laxation", "safety in family life", and "socialappraisal" from the hierarchy of Rokeach8 andadded "health",9 "bearing and rearing chil-dren", and "health of the children".

Sociodemographic data included sex, edu-cation (general/technical), the occurrence ofhandicaps or genetic diseases in their family,whether they have contact with people with a

handicap or a genetic disease in their en-

vironment, and religious practice (not religious/religious and rarely attending church/ religiousand irregularly attending church/ religious andquite regularly attending church/ religious andvery frequently attending church). In Flanders,religious people are mostly Roman Catholic.The relationship between the variables men-

tioned was studied by means of the Kendallrank correlation coefficient (tau).s" Only thesignificant associations (p<005) will be men-tioned in the results section.

ResultsATTITUDES TOWARDS GENETIC INFORMATION,PRENATAL DIAGNOSIS, AND PREGNANCYTERMINATIONAbout 17% of the sample (table 1) replied thatthey would certainly seek information aboutgenetic risks before pregnancy and 39% saidthey would probably do this. During the in-terview, the majority of the subjects gave onlyone argument for or against information seek-ing, some gave more than one, and some madeno comments. The most important argumentsfor information seeking were: making informeddecisions about reproduction (32-9% of thesample) and being better emotionally preparedfor the birth of a child with a severe geneticdisease or handicap (20 1%). Making informeddecisions refers to expressions such as "I wouldtake reproductive decisions on the basis of theinformation", "After getting information on

genetic risks, I would choose between havingchildren or not". The most frequently givenargument against asking for information was astrong desire for children regardless of possiblegenetic problems (11 0% of the sample). Thiscategory covers comments such as "I want tohave children anyway", "One should acceptchildren as they are", "Information would haveno effect on my desire for children". Anxietyand stress about the information given was onlysporadically reported as an objection (2-4%).A small proportion of the sample (7 9%) saidthat they did not need information becausethere were no genetic diseases in their familyand 6-7% said that they would not think aboutsuch matters at the moment of making re-productive plans. Nearly 13% of the sampleclaimed that their future information seekingwould depend on the presence or absence ofgenetic disease in the family.About 18% of the sample (table 1) asserted

that they would like to have prenatal diagnosisand 44-5% said that they probably would useit. The free comments during the interviewshowed that being better prepared for the birthof a child with serious problems was the mostfrequently given argument (39 6%) in favourof prenatal testing. Making informed decisionsabout pregnancy termination was the secondmost important argument (mentioned by21-3% of the sample). About 7% said theywould like to have a prenatal diagnosis so thatspecial treatment of the newborn baby couldstart in time. Reluctance for abortion was themost important objection against prenatal dia-gnosis. Anxiety about the result of prenataltesting was mentioned by 4 9% of the sample.This anxiety category covers comments suchas "Knowing that I am pregnant with a childwith a serious handicap would be too stressing".Eleven percent claimed that their use of pre-natal diagnosis would depend on the presenceof genetic disease in the family.The attitudes towards pregnancy termination

in the three hypothetical situations are alsopresented in table 1. Only a minority of theadolescents answered that they would want atermination. The spoken comments on preg-nancy termination showed that a large pro-portion of students (43-4%) claimed thatpregnancy termination should only be allowedfor "serious reasons": "if the mother's life is indanger", "if the mother has been raped", "ifthe mother is only 17 years old", "if the fetushas a serious handicap", "if the child wouldsuffer too much", "ifthe child would die soon",... Sixteen percent of the students rejectedabortion completely ("A child with a severehandicap also has a right to live", "Abortion ismurder", ...). A subgroup of the sample(8 4%) spontaneously added in their spokencomments that a pregnancy termination shouldbe the decision of the parents and not of a thirdparty.

CORRELATIONS OF ATTITUDES AND SOMERELEVANT VARIABLESA positive attitude towards health related pre-vention in general, measured by the EHBS

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Table 2 Perceived susceptibility to having a newbornchild with a genetic disease or a congenital malformationfor oneself andfor a random couple in the generalpopulation

Own risk Risk of randomcouple

Less than 1% 20 8% 6-7%1-2% 27 7% 21 6%3-5% 25-4% 31-3%6-10% 13 8% 23 2%11-20% 5 4% 12 7%25% 2-3% 1 5%50% 46% 3 0%

Table 3 Perception of society s role with regard to geneticdiseases and congenital handicaps (multiple choicequestions)

Society has to try to prevent the birth of seriouslyhandicapped children by giving information to the generalpopulation.Agree 77-4% Disagree 7-9% Don't know 14-6%

Society has to try to prevent the birth of seriouslyhandicapped children by stimulating young couples to ask adoctor for information before having children.Agree 65 9% Disagree 15 9% Don't know 18 3%

Table 4 Perceived importance of values (mean, SD)Mean SD

Having success in life 4-4 1-5Pleasure and relaxation 6-2 1 5Safety in family life 5 9 1-2Health 6 4 0 8Social approval 61 1.1Bearing and rearing children 5-2 1 5Health of the children 6 6 0-8

(mean item score=6-8, SD 1-3), was sig-nificantly correlated with personal intentionsregarding asking for information before preg-nancy (tau = 0-16, p<0 0 1) and regarding mak-ing use of prenatal diagnosis (tau = 0-13, p =0 05). We found no significant associationsbetween basic genetic awareness and the ado-lescents' attitudes towards genetic informationand tests. The mean knowledge score on the10 multiple choice items was 3-2 (SD 1-7).The mean perceived parental burden was

6-1 (SD 1-0) for the birth of a child with a

severe mental handicap, 5 - 5 (SD 1 * 2) for the birthof a seriously physically handicapped child,and 5 9 (SD 1-0) for the birth of a child witha severe genetic disease. Significant correlationswith personal intentions were found: the morethey claimed to be in favour of prenatal dia-gnosis, the higher they perceived the burdenof the birth of a child that would be seriouslymentally retarded (tau = 0 25, p<0-00 1), of thebirth of a child with a severe physical handicap(tau = 0 12, p = 0 06), and ofthe birth of a childwith a genetic disease (tau=0-14, p<0 05).Opting for pregnancy termination was more

likely to correspond to a higher perceived bur-den of having a child with a mental handicap(tau=0-18, p<0-01), with a physical handicap(tau=0 19, p<0-01), or with a genetic disease(tau=0-21, p<0-01).The mean item score on the HOS (perceived

self-concept of a person with a handicap) was

3*1 (SD 0 6) for mental handicap, 2-6 (SD0-6) for physical handicap, and 2-5 (SD 0 5)

for a genetic disease. We found no significantassociations of these perceived feelings with theattitudes to genetic information and coun-selling.None of the questions about the perceived

susceptibility correlated significantly with thestudents' attitudes. Table 2 presents the dis-tribution of the responses. A salient findingwas that the frequency distribution of theirown risk significantly shifted to the lower riskcategories, compared with the risk distributionfor a random couple (sign test; z= 5-65,p<00001).

Table 3 presents the opinion of the studentsabout the preventive role of society. Nearly40% of those who agreed with the first state-ment added that providing information aboutgenetics is important, although the decisionabout what to do with this information shouldnot be influenced by society. With regard tothe second statement, the only comment ofthose agreeing was that asking a doctor forinformation about genetic risks was importantbut that society should not restrict the freechoice of the couple (44 5% of 108 persons).Agreeing with stimulating young couples toseek information about increased genetic risksas being a task of society (statement 2) wassignificantly associated with the personal in-tentions to ask for information about increasedgenetic risks before making reproductive de-cisions (tau=0 24, p<0001).Table 4 presents the mean scores for the

importance of seven values. Both values con-cerning health, own health and that of thechildren, attained the highest means and thelowest dispersion. The more they were in favourof asking for information before making re-productive plans and of asking for prenataldiagnosis, the higher they valued "own health"(tau=0 18, p<0 01 and tau=0-13, p=0 05).Neither "health of the children" nor othervalues correlated significantly with personalintentions.The personal intentions of the students were

associated with neither the occurrence of han-dicaps or genetic diseases in the family (ac-cording to the students) nor with having contactwith persons with a genetic disease or handicapin the environment. About 30% of the sampleclaimed that they had members of their familywith a genetic problem. It generally did notconcern parents, brothers, or sisters, but grand-parents, aunts, uncles, or cousins. The mostfrequently mentioned handicaps and diseaseswere: diabetes (10), Down's syndrome (7),cancer (4), heart disease (3), asthma (2), andmultiple sclerosis (2). About 48% of the stu-dents said that they had contact with a personwith a genetic disease or a handicap in theirenvironment. Frequently mentioned diseasesand handicaps (besides those mentioned ina familial context) were: cystic fibrosis (16),mental handicap (not specified) (8), physicalhandicap (not specified) (4), person in a wheel-chair (3), person with hydrocephalus (2), per-son with muscular problems (2), deafness (1).The regularity of religious practice was neg-

atively correlated with the intention of havinga pregnancy termination should the fetus be

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seriously affected: tau = 0 *2 1 (p<0 01) for men-tal handicap, tau = 016 (p<005) for physicalhandicap, and tau=0-18 (p<0O01) for a severegenetic disease. There were no significant cor-relations with other sociodemographic data.

DiscussionSpontaneous beliefs and opinions of ado-lescents about genetic disease, genetic risk in-formation, and genetic testing have receivedlittle attention in the past. In the present studythese opinions were elicited in the context of astructured face to face interview about healthand prevention, including genetic disease. Thedesign ofthe study, standardised questionnairesembedded in an interview, allowed the ado-lescents to express fully their beliefs, comments,and concerns in a situation of personal contactwith a psychologist of the Centre of HumanGenetics in Leuven.The results show that more than half of

the students said that they were interested ininformation about genetic risks before re-production, so that they would probably orcertainly ask a doctor for more information.One third argued that this information wouldgive them the opportunity to make informeddecisions about having children or not. Anotherbenefit was being better emotionally preparedfor the birth ofan affected child. Eleven percentof the adolescents mentioned that they wantedchildren anyway, regardless of possible geneticrisks; they used this as an argument againstseeking information about genetic risks. A morepositive attitude towards information seekingbefore reproduction was significantly as-sociated with a more favourable attitude to-wards prevention of health problems in generaland with valuing their own health higher. It isintriguing that we did not find a significantcorrelation with the value "health of the chil-dren".

Sixty-three percent of the students said thatthey would consider prenatal testing duringpregnancy. Being emotionally better preparedfor the birth ofan affected child, not preventingits birth, was the most important argument.Only one in five adolescents would make useofprenatal diagnosis to decide about pregnancytermination. Evers-Kiebooms et all' reportedthat prenatal testing would be certainly or prob-ably used by three quarters of a sample of 385adults in the general population in a hy-pothetical situation of a 25% risk for having aphysically or mentally handicapped child. Theless positive attitude towards prenatal diagnosisin the group of adolescents may be partly be-cause of the difference in phrasing of the ques-tions. We found significant associations withthe attitude towards health related preventionin general, with perceived parental burden ofthe birth of an affected child, and with thevalue "own health".The attitudes towards pregnancy termination

in the three hypothetical situations showed areluctance for it. The students emphasised intheir free comments that it should only beallowed for "serious" reasons, such as dangerto the mother's life, rape, too much suffering

of the child, or a "serious" handicap of thefetus. At their age, lack of experience of lifemay be an impediment to weighing up theseverity and burden of various conditions.However, in the context of this study, theirsubjective interpretation is more important. Itis obvious that different adolescents might havecompletely different conditions in mind whenthey gave an answer about "a serious han-dicap". The main point of interest, however,is their subjective perception of a serious situ-ation. The students seemed to realise that thereare serious and less serious indications for abor-tion. These findings suggest that they developa critical attitude when confronted with in-formation about genetic diseases and geneticcounselling, which is an important conditionto be fully aware ofthe psychological and ethicalissues connected with genetic technology. Ad-ults showed a less negative attitude towardsabortion than adolescents. About 40% of thesample of the study of Evers-Kiebooms et alllwould consider pregnancy termination if thechild would be mentally handicapped and 17%would consider it for a physically handicappedfetus. Green et al,'2 questioning 1757 womenbooking for antenatal care in Britain, foundthat 66% would consider an abortion shouldthere be "a strong chance that the baby will behandicapped". Another interesting finding wasthat young women were more opposed to abor-tion than older women. These and other studiesin the general population613 showed a dis-crepancy between acceptance of prenatal test-ing and pregnancy termination. In the presentstudy this discrepancy is even more pronouncedand may be because ofthe lack oflife experienceof the students as well as their differentspontaneous view on the purpose of prenataltesting, namely being prepared for the birth ofan affected child, rather than preventing itsbirth. This should be taken into account whensetting up an information campaign for youngpeople. Too strong an emphasis on pregnancytermination after prenatal diagnosis may inducean aversion towards genetic information andgenetic counselling, which may compromisetheir future information seeking about geneticrisks.For each of the three hypothetical situations,

intentions concerning prenatal testing andpregnancy termination were correlated with theperceived parental burden of the birth of aseriously affected child, and not with the per-ceived feelings of the child. The latter findingis intriguing because suffering of the child wasspontaneously mentioned as a reason to choosepregnancy termination.Awareness of basic genetic concepts was

poor. About half of the students perceived therisk of having a child with a serious geneticdisease or congenital malformation to be be-tween 1 and 5%. The others clearly un-derestimated or overestimated the risk. Thestudents had on average a more optimistic viewof their own genetic risk than of the risk of arandom couple: the perceived susceptibility tothe birth of a baby with a serious congenitalproblem shifted significantly to lower risk fig-ures when estimating their own risk, compared

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with the estimation of another's risk. This phe-nomenon is called unrealistic optimism, whichis often observed in various risk situations.'4"5It should be taken into account when organisingeducational programmes, since it may withholdpeople from seeking or recording informationwhich may be relevant for them.The students hold the conviction that society

should play a role with regard to these issues.Providing information about genetics in generaland promoting information seeking about gen-

etic risks before reproduction were consideredas acceptable tasks for society, with the im-portant condition that society should not im-pose what one should do with this information.The fact that the two questions about the roleof society immediately elicited many remarksconcerning the autonomy of the individual per-

son may be the result of an ambiguity in thephrasing of the statements. The actual pre-

sentation did indeed not offer the opportunityto endorse a positive statement about the statenot having a preventive role and respecting thefreedom of the individual. Agreeing with thestatement implied a double agreement, namelyagreeing that society has to prevent the birthof a seriously handicapped child as well as

agreeing about the means to achieve this. It isclear from their reactions that students wantto be free to decide what they want to do withthe information they receive; they do not wantto be obliged by society to "prevent" the birthof an affected child. The autonomy of theindividual person is indeed essential in clinicalgenetics. An information campaign concerninghuman genetics aimed at increasing knowledgeshould therefore explicitly address the issue

of the freedom of the individual person withrespect to reproductive decisions making andgenetic testing.

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2 Kormondy EJ. Ethics and values in the biology classroom.Am Biol Teach 1990;52:403-7.

3 Garver KL, LeChien K. Geneticists' responsibility to otherhealth care professionals and to the lay public. Am J HumGenet 1992;51:922-3.

4 VSOP. Standard model for production of educational materialsof genetics for secondary schools. Unpublished manuscript.European project (Belgium, Germany, Holland, Ireland,UK), 1992.

5 Wardle J, Steptoe A. The European Health and BehaviourSurvey: rationale, method and initial results from theUnited Kingdom. Soc Sci Med 1991;33:925-36.

6 Decruyenaere M, Evers-Kiebooms G, Van den Berghe H.Community knowledge about human genetics. In: Evers-Kiebooms G, Fryns JP, Cassiman JJ, Van den Berghe H,eds. Psychosocial aspects of genetic counselling. March ofDimes, Birth Defects. Vol 28. New York: Wiley, 1992:167-84.

7 Wooldridge EQ, Murray RF. The Health Orientation Scale:a measure of feelings about sickle cell trait. Soc Biol 1989;35:123-36.

8 Rokeach M. The nature of human values. New York: FreePress, 1973.

9 Kristiansen CM. Value correlates of preventive health be-havior. J Pers Soc Psychol 1985;49:748-58.

10 Siegel S, Castellan NJ. Nonparametric statisticsfor behaviouralsciences. 2nd ed. New York: McGraw-Hill, 1988.

11 Evers-Kiebooms G, Denayer L, Decruyenaere M, Van denBerghe H. Community attitudes towards prenatal testingfor congenital handicap. J Reprod Infant Psychol 1993;11:21-30.

12 Green J, Snowdon C, Statham H. Pregnant women's at-titudes to abortion and prenatal screening. 7 Reprod InfantPsychol. 1993;11:31-9.

13 Watson EK, Williamson R, Chapple J. Attitudes to carrierscreening for cystic fibrosis: a survey of health care pro-fessionals, relatives of sufferers and other members of thepublic. BrJ Gen Pract 1991;41:237-40.

14 Weinstein ND Unrealistic optimism about illness sus-ceptibility: conclusions from a community-wide sample.J Behav Med 1987;1O:481-500.

15 Welkenhuysen M, Evers-Kiebooms G, Decruyenaere M,Van den Berghe H. Unrealistic optimism and genetic risk.Psychol Health (in press).

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