Attitudes toward Abortion among Parents of Children with Cystic Fibrosis
Dorothy C. Wertz, PhD, Janet M. Rosenfield, MS, Saly R. Janes, MSW, and Richard W. Erbe, MD
Introduction Parents of children with genetic disorders are frequently ambivalent toward selective abortion of affected fetuses and may regard the abortion as a rejection of their affected child. Although some studies report that the majority of these parents do not consider abortion acceptable for the disorder in question, ' other studies indicate that such parents may be more willing to abort than the general population.9-'0 Attitudes toward abortion follow a spectrum of perceived severity, severe mental retardation (MR) being the most crucial factor. Most women (94% to 97%) with prenatally diagnosed fetal abnormalities involving severe MR (e.g., trisomies 13, 18, or 21) choose abortion." Fewer women (62%) choose abortion for sex chromosome abnormalities (e.g., 45, X Tumer syndrome or 47, XXY Klinefelter syndrome) that are not ordinarily associated with retardation.'2 Severe physical disability ranks next. Among women undergoing MSAFP (matemal serum ot-fetoprotein) screening for neural tube defects, 57% would abort if there "was a very good chance that the child would be bom with a serious physical handicap [sic], for example, blindness or paralyzed legs."'13 Some common genetic disorders such as cystic fibrosis (CF) involve neither MR nor significant physical limitations, but carry a reduced life expectancy and increased morbidity. CF is the most common autosomal recessive disorder affecting Caucasian populations, with an incidence of 1 in 2000 to 3000 births. About 30 000 individuals in the United States are affected. Improved palliative treatment has extended life expectancy and improved quality of life. In 1988, 75% sur-
vived into their late teens, half reached the age of 26, and about 40% reached the age of 30, though few survived to their fifth decade. 14 Since late 1985, identification of deoxyribonucleic acid (DNA) probes linked to the CF gene has allowed accurate prenatal diagnosis for families who have had a previous child with CF and for whom specimens for the affected child and both parents can be analyzed in parallel with amniotic fluid or chorionic villi (CVS) specimens.'5-16 In other nations the majority of such families (65% in Belgium,'7 52% in Wales'8) would abort a CF fetus. In France, parents chose to terminate 53 of 56 CF fetuses following prenatal diagnosis.19 There are no comparable studies in the United States. Our specific aims were (1) to find out how parents of affected children viewed abortion for CF, and (2) to see where parents placed CF in a wider spectrum of situations that might justify abortion.
Methods Questionnaire Content Our questions on abortion were part of a larger study of psychosocial factors Dorothy C. Wertz is with the Health Services Section, School of Public Health, Boston University. Janet M. Rosenfield is with the Shriver Center for Mental Retardation, Waltham, Mass. Sally R. Janes and Richard W. Erbe are with the Division of Human Genetics and Department of Obstetrics/Gynecology, Children's Hospital, Buffalo, NY. Requests for reprints should be sent to Dorothy C. Wertz, PhD, Health Services Section, School of Public Health, Boston University, 80 East Concord Street, Boston, MA 02118. This paper was submitted to the journal October 2, 1990, and accepted with revisions April 4, 1991.
August 1991, Vol. 81, No. 8
Abortion Attitudes among Parents of CF Children
affecting use of prenatal diagnosis for CF in six New England states. We anticipated that parents might be less likely to abort for CF than for severe MR, severe physical disability, conditions that threatened the mother's life or health, and rape or incest, and more willing to abort for CF than for late-onset or cosmetic conditions. We asked about attitudes toward abortion in 23 situations, including 12 maternal or family situations and 11 conditions affecting the child. Respondents were asked to give one of three responses: (1) "I would have an abortion," (2) "I would not have an abortion, but it should not be prohibited for others," or (3) "I think abortion should be prohibited by law." We included situations described in opinion polls (mother's life, rape, incest), or used as rationales for abortion (maternal age under 15, mother's career, financial burden, family completed). In describing fetal characteristics, we avoided listing names of specific disorders and instead briefly described the child's condition (e.g., instead of trisomy 18, "severe mental retardation: child unable to speak or understand"; instead of Tay-Sachs, "severe genetic disorder leading to death before age 5"; instead of Huntington disease, "severe painful disorder starting at age 40, incurable"). We included several conditions that are not presently diagnosable prenatally, such as susceptibility to alcoholism, "severe incurable disorder at age 60" (Alzheimer disease), and "severe, untreatable obesity." We included obesity because of concerns that, if ever given the opportunity, some parents may make prenatal selections on cosmetic grounds, such as hair, eye, or skin color, or stature.20 Finally, we included sex selection because, despite much publicity and two recent surveys of physicians,21-23 there are no surveys of parental attitudes. Previous studies have found associations between abortion attitudes and religion,9'10'24 religiosity,13'25 education,10 25'26 income,10 previous elective abortion,9 and interpretation of risk,9 but a recent study of CF families in the United Kingdom found no association between abortion attitudes and social class.18 The 15-page questionnaire included the above variables and sections on reproductive history, reproductive plans, health of the affected child, expectations about the child's activities 5 and 10 years from now, knowledge about new genetic tests, and standard sociodemographic data. Most questions called for categorical (yes-no) responses. Five-point Likert scales were used to describe the interpretation of risk
August 1991, Vol. 81, No. 8
,-
~
~
Would AbortD
m
GM
~~~~n
%
hI
WY*
60%
as%
54%
W zr
4
46%
20 .*I * 7%
aI _ TfrM 1 2 __ws
LID
_ 1 2 _
lLI|1 2
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a 1 2
6%
1 2 r Ftw F.mly -U wbd C mhdI Budm 1 2
2m
2%2%
1 2 1 2 MSOwS Fflu
C.
Cum
FIGURE 1-Abortion for Matemal or Family Situation (N = 271).
and the attitudes of spouses, members of extended family, and medical professionals toward abortion for CF, and (in a separate question) support of those persons carrying a CF fetus to term. There are liabilities in studying attitudes rather than actual behaviors. Low prevalence and the practical difficulties of obtaining abortion histories limited us to a study of attitudes. Some studies have found attitudes strongly related to subsequent behavior.24 27
Distribution Starting in January 1989, all 12 CF centers in New England distributed the questionnaires to parents of children enrolled as patients. Depending on the clinic, questionnaires were either given out at regular clinic visits over a 4-month period (most CF patients visit every 3 months) to be returned by mail, or were mailed directly to families. The two modes of administration produced almost identical response rates. In order to ensure anonymity, all questionnaires were returned directly to project staff at the Shriver Center, not to the clinics.
Data Analysis Questionnaire data were entered into Statistical Package for the Social Sciences (SPSSX) and Statistical Analysis System (SAS) programs. Using the statement "I would have an abortion" in the first trimester as the dependent variable, we looked for associations with sociodemographic variables, child's health, future expectations, interpretation of risk, and extended family's attitudes toward abortion. The five-point Likert scales were reduced to three points in order to eliminate small cells for "strongly approve." Anal-
yses of subsets by gender, religion, and religiosity (weekly attendance) were conducted to rule out the possibility of interaction. For each of the 23 abortion questions, all variables that associated, at the zero-order level, with "I would have an abortion" were entered into a stepwise logistic regression. This method orders each independent variable in terms of its strength ofassociation with the dependent variable, while controlling for other variables. For each independent variable that was significantly associated, the method provided an odds ratio for personal acceptance of abortion.
Profile of Respondents Of 395 parents asked to participate, 271 (68%, 228 families) responded. Their children's health status corresponded generally with the national clinical profile of CF.1128-29 The children's median age was seven; 90% had pancreatic involvement; 73% required chest physical therapy, including 46% who required it from one to five times daily; and 42% had been hospitalized within the last year. Parents appeared typical of CF families in other studies: median age was 35; 36% were college graduates and median income was $30 000 to $40 000. These figures were comparable to an earlier California study of CF families' attitudes toward prenatal diagnosis.30 Seventyeight percent were living with the affected child's other parent, and 57% were Catholic, figures comparable to a New York City study.3' The high proportion of Catholics may result from greater frequencies of the CF gene in the Irish, Italian, and French populations found in New England.1431 Of respondents, 73% were feAmerican Journal of Public Health 993
Wertz et al.
ITnA *Iti
Trknuutr 1 2 1 2 1 2 1 2 vsm -
Wan kW fwLUk ba momN ApI
*Mod -
1 2
1 2
1 2
CF
"Smer Dla_r MM
'Md -
1 2
1 2
1 2
1 2
TtaI Sea t SerS let ODile hh ta st. Mooal0Am C Da
1 2 aSn
Serme MR: Unable to speak or understwn
Maoderae MR: Couid communicate, not lIv Independently Mild MR: Could hold job and Hve Indepedntly -Develop svre painful daorder, Incumable Cleft palte, na ednes "Child is not sex desId by paret
FIGURE 2-Abortion for Fetal Characteristics (N = 271).
male and 13% had had a previous elective abortion. In all, 52% had been surgically sterilized (compared with 62% in a previous study3), 15% were either beyond reproductive age or no longer living with the child's other parent, and 33% were still fertile and at risk for having another child with CF. Although 27 persons did not respond to the question about abortion for CF in the first trimester or to other questions about abortion, there were no statistically significant differences between respondents and nonrespondents.
Results Responses are described in Figure 1 (maternal or family situations) and Figure 2 (fetal characteristics). The majority believed that abortion should be legal in all 23 situations during the first trimester and in 20 of the 23 situations during the second trimester (white bars). For all situations, fewer respondents approved legal abortion in the second trimester than in the first trimester, with an average difference of 11 percentage points. There was a steady gradation in personal acceptance of abortion (shaded bars), running from "mother's life in danger" down to "child would interfere with father's career" (Figure 1) and from "severe mental retardation" to "child is not of sex desired by parents" (Figure 2). Severe MR was the only fetal characteristic for which the majority (58%) would themselves abort (Figure 2). For CF itself, 20%
994 American Journal of Public Health
would abort in the first trimester, and 17% in the second trimester. In both Figures 1 and 2, 80% to 100% of those represented in a shaded bar are also represented in the shaded bars to the left. For example, of those who would abort for CF, 86% would also abort for moderate MR, 88% if the child would be bedridden for life, and 100% if the child would die before age five or have severe MR. An average of 9% fewer women would abort in the second trimester than in the first trimester for maternal or family situations, and an average of 5% fewer women would abort in the second trimester for fetal characteristics. Men made less differentiation between trimesters (6% for matemal situations and 1% for fetal characteristics). Characteristics associated at the zero-order level with personal willingness to abort are presented in Table 1. Men were more likely than women to say either that they would abort or that abortion should be prohibited by law. Men eschewed the middle ground of not aborting but permitting it for others. Gender was not related to any responses concerning fetal characteristics. For all maternal or family situations and all fetal characteristics except sex selection, attitudes toward abortion were associated with respondent's perception of attitudes of spouse, mother, father, and siblings toward abortion of a fetus with CF. The majority thought that their spouses (65%), mothers (60%), fathers (55%), and siblings (51%) would disapprove. These views were closely interre-
lated, with Pearson correlation coefficients of >.6. Family attitudes toward abortion for other disorders were not surveyed. In addition, the following variables (not reported in Table 1) were associated with abortion for CF: perceived approval of abortion for CF by father-in-law or mother-in-law, approval of abortion for CF by affected child or by other children, approval of abortion for CF by CF doctor or genetic counselor, and perceived absence of support from spouse, family doctor, or CF doctor for carrying a fetus with CF to term. Not associated with any attitudes toward abortion, including abortion for CF, were age, fertility status, marital status, number of children, CF child's health, future expectations about the CF child, cost of the child's illness, knowledge about prenatal diagnosis, interpretation of genetic risk, and reproductive intentions. No sociodemographic variables were significantly related to abortion for obesity, severe disorder at 60, susceptibility to alcoholism, treatable defect, or sex selection. Stepwise logistic regression analyses were performed for all abortion situations in Table 1. Characteristics strongly and independently related to willingness to abort (P < .10) are indicated. Some general patterns emerged from the regression analyses. Religious background was related largely to maternal or family situations, where traditional Catholic social values may remain, rather than to abortion for fetal characteristics. In many situations, those with higher education were more willing to abort than those with less education. Family attitudes were among the strongest factors related to personal abortion decisions. For persons living in a family context, it is difficult to make an abortion decision that contradicts the values of their spouses and extended families. Respondents' perceptions of their mothers' views were especially important for maternal or family situations. For spousal views, respondents' perceptions were accurate in the 43 families in which both spouses responded. Regression results for abortion for CF and severe MR are reported in Tables 2 and 3. Table 2 shows that parents' perceptions of the views of their CF doctors toward abortion for CF were significant. In all, 15% thought their CF doctorswould approve, 45% thought they would disapprove, and 40% thought they would be neutral.
August 1991, Vol. 81, No. 8
Abortion Attitudes among Parents of CF Children
Dicussion The major finding, that a minority of parents of children with CF (20%) would abort a CF fetus, suggests that prenatal diagnosis will not lead to a substantial reduction in the number of CF births among this group, at least in the United States. Most parents in this sample apparently do not regard selective abortion for CF as an
acceptable reproductive option, although they believe this option should be available to others. Many affected families may not welcome public health efforts to provide prenatal testing for CF. The majority of CF families may proceed as they did before prenatal diagnosis became available: they will either curtail reproduction (as many do) or take their chances. However, in the wider spectrum of abortion attitudes, the majority would abort for severe MR and many for a child bedridden for life. Optimism about CF was pervasive; families expected their child to reach age 40, hold a full-time job, and marry. With discovery of the gene for CF, optimism has probably increased. At the other end ofthe spectrum, few would abort for adult-onset disorders starting at age 40 or 60, for genetic susceptibility to alcoholism, or for sex selection, areas now receiving much attention. Although overall responses suggest that most would not use abortion frivolously,
August 1991, Vol. 81, No. 8
responses to the obesity question aroused our concern. Apparently, there is a not
insubstantial minority who would abort for cosmetic purposes if prenatal assessment were possible. The trimester of pregnancy had less relationship to personal willingness to abort than might be expected. For most fetal conditions, including CF, only 5% fewer women would abort in the second trimester than in the first. This result suggests that newer methods of prenatal diagnosis, such as CVS, which make firsttrimester abortions possible, may have little effect on deeply held attitudes.
In genetic counseling, it would be appropriate to acknowledge the effects of extended family networks on patients' views and to encourage patients to discuss the relationship between personal and family values. The attitude of the physician caring for the affected child may influence parents' decisions. Fewbelieved that their CF doctors would support abortion of a fetus with CF. Counselors should discuss these parental perceptions, which may reflect the clinically necessary optimism conveyed by pediatricians, rather than the doctors' actual views. Finally, the relationships between sociodemographic var-
American Joumal of Public Health 995
Wertz et al.
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Dorothy C. Wertz, PhD, Janet M. Rosenfield, MS, Saly R. Janes, MSW, and Richard W. Erbe, MD
Introduction Parents of children with genetic disorders are frequently ambivalent toward selective abortion of affected fetuses and may regard the abortion as a rejection of their affected child. Although some studies report that the majority of these parents do not consider abortion acceptable for the disorder in question, ' other studies indicate that such parents may be more willing to abort than the general population.9-'0 Attitudes toward abortion follow a spectrum of perceived severity, severe mental retardation (MR) being the most crucial factor. Most women (94% to 97%) with prenatally diagnosed fetal abnormalities involving severe MR (e.g., trisomies 13, 18, or 21) choose abortion." Fewer women (62%) choose abortion for sex chromosome abnormalities (e.g., 45, X Tumer syndrome or 47, XXY Klinefelter syndrome) that are not ordinarily associated with retardation.'2 Severe physical disability ranks next. Among women undergoing MSAFP (matemal serum ot-fetoprotein) screening for neural tube defects, 57% would abort if there "was a very good chance that the child would be bom with a serious physical handicap [sic], for example, blindness or paralyzed legs."'13 Some common genetic disorders such as cystic fibrosis (CF) involve neither MR nor significant physical limitations, but carry a reduced life expectancy and increased morbidity. CF is the most common autosomal recessive disorder affecting Caucasian populations, with an incidence of 1 in 2000 to 3000 births. About 30 000 individuals in the United States are affected. Improved palliative treatment has extended life expectancy and improved quality of life. In 1988, 75% sur-
vived into their late teens, half reached the age of 26, and about 40% reached the age of 30, though few survived to their fifth decade. 14 Since late 1985, identification of deoxyribonucleic acid (DNA) probes linked to the CF gene has allowed accurate prenatal diagnosis for families who have had a previous child with CF and for whom specimens for the affected child and both parents can be analyzed in parallel with amniotic fluid or chorionic villi (CVS) specimens.'5-16 In other nations the majority of such families (65% in Belgium,'7 52% in Wales'8) would abort a CF fetus. In France, parents chose to terminate 53 of 56 CF fetuses following prenatal diagnosis.19 There are no comparable studies in the United States. Our specific aims were (1) to find out how parents of affected children viewed abortion for CF, and (2) to see where parents placed CF in a wider spectrum of situations that might justify abortion.
Methods Questionnaire Content Our questions on abortion were part of a larger study of psychosocial factors Dorothy C. Wertz is with the Health Services Section, School of Public Health, Boston University. Janet M. Rosenfield is with the Shriver Center for Mental Retardation, Waltham, Mass. Sally R. Janes and Richard W. Erbe are with the Division of Human Genetics and Department of Obstetrics/Gynecology, Children's Hospital, Buffalo, NY. Requests for reprints should be sent to Dorothy C. Wertz, PhD, Health Services Section, School of Public Health, Boston University, 80 East Concord Street, Boston, MA 02118. This paper was submitted to the journal October 2, 1990, and accepted with revisions April 4, 1991.
August 1991, Vol. 81, No. 8
Abortion Attitudes among Parents of CF Children
affecting use of prenatal diagnosis for CF in six New England states. We anticipated that parents might be less likely to abort for CF than for severe MR, severe physical disability, conditions that threatened the mother's life or health, and rape or incest, and more willing to abort for CF than for late-onset or cosmetic conditions. We asked about attitudes toward abortion in 23 situations, including 12 maternal or family situations and 11 conditions affecting the child. Respondents were asked to give one of three responses: (1) "I would have an abortion," (2) "I would not have an abortion, but it should not be prohibited for others," or (3) "I think abortion should be prohibited by law." We included situations described in opinion polls (mother's life, rape, incest), or used as rationales for abortion (maternal age under 15, mother's career, financial burden, family completed). In describing fetal characteristics, we avoided listing names of specific disorders and instead briefly described the child's condition (e.g., instead of trisomy 18, "severe mental retardation: child unable to speak or understand"; instead of Tay-Sachs, "severe genetic disorder leading to death before age 5"; instead of Huntington disease, "severe painful disorder starting at age 40, incurable"). We included several conditions that are not presently diagnosable prenatally, such as susceptibility to alcoholism, "severe incurable disorder at age 60" (Alzheimer disease), and "severe, untreatable obesity." We included obesity because of concerns that, if ever given the opportunity, some parents may make prenatal selections on cosmetic grounds, such as hair, eye, or skin color, or stature.20 Finally, we included sex selection because, despite much publicity and two recent surveys of physicians,21-23 there are no surveys of parental attitudes. Previous studies have found associations between abortion attitudes and religion,9'10'24 religiosity,13'25 education,10 25'26 income,10 previous elective abortion,9 and interpretation of risk,9 but a recent study of CF families in the United Kingdom found no association between abortion attitudes and social class.18 The 15-page questionnaire included the above variables and sections on reproductive history, reproductive plans, health of the affected child, expectations about the child's activities 5 and 10 years from now, knowledge about new genetic tests, and standard sociodemographic data. Most questions called for categorical (yes-no) responses. Five-point Likert scales were used to describe the interpretation of risk
August 1991, Vol. 81, No. 8
,-
~
~
Would AbortD
m
GM
~~~~n
%
hI
WY*
60%
as%
54%
W zr
4
46%
20 .*I * 7%
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LID
_ 1 2 _
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2
1
Mc15
a 1 2
6%
1 2 r Ftw F.mly -U wbd C mhdI Budm 1 2
2m
2%2%
1 2 1 2 MSOwS Fflu
C.
Cum
FIGURE 1-Abortion for Matemal or Family Situation (N = 271).
and the attitudes of spouses, members of extended family, and medical professionals toward abortion for CF, and (in a separate question) support of those persons carrying a CF fetus to term. There are liabilities in studying attitudes rather than actual behaviors. Low prevalence and the practical difficulties of obtaining abortion histories limited us to a study of attitudes. Some studies have found attitudes strongly related to subsequent behavior.24 27
Distribution Starting in January 1989, all 12 CF centers in New England distributed the questionnaires to parents of children enrolled as patients. Depending on the clinic, questionnaires were either given out at regular clinic visits over a 4-month period (most CF patients visit every 3 months) to be returned by mail, or were mailed directly to families. The two modes of administration produced almost identical response rates. In order to ensure anonymity, all questionnaires were returned directly to project staff at the Shriver Center, not to the clinics.
Data Analysis Questionnaire data were entered into Statistical Package for the Social Sciences (SPSSX) and Statistical Analysis System (SAS) programs. Using the statement "I would have an abortion" in the first trimester as the dependent variable, we looked for associations with sociodemographic variables, child's health, future expectations, interpretation of risk, and extended family's attitudes toward abortion. The five-point Likert scales were reduced to three points in order to eliminate small cells for "strongly approve." Anal-
yses of subsets by gender, religion, and religiosity (weekly attendance) were conducted to rule out the possibility of interaction. For each of the 23 abortion questions, all variables that associated, at the zero-order level, with "I would have an abortion" were entered into a stepwise logistic regression. This method orders each independent variable in terms of its strength ofassociation with the dependent variable, while controlling for other variables. For each independent variable that was significantly associated, the method provided an odds ratio for personal acceptance of abortion.
Profile of Respondents Of 395 parents asked to participate, 271 (68%, 228 families) responded. Their children's health status corresponded generally with the national clinical profile of CF.1128-29 The children's median age was seven; 90% had pancreatic involvement; 73% required chest physical therapy, including 46% who required it from one to five times daily; and 42% had been hospitalized within the last year. Parents appeared typical of CF families in other studies: median age was 35; 36% were college graduates and median income was $30 000 to $40 000. These figures were comparable to an earlier California study of CF families' attitudes toward prenatal diagnosis.30 Seventyeight percent were living with the affected child's other parent, and 57% were Catholic, figures comparable to a New York City study.3' The high proportion of Catholics may result from greater frequencies of the CF gene in the Irish, Italian, and French populations found in New England.1431 Of respondents, 73% were feAmerican Journal of Public Health 993
Wertz et al.
ITnA *Iti
Trknuutr 1 2 1 2 1 2 1 2 vsm -
Wan kW fwLUk ba momN ApI
*Mod -
1 2
1 2
1 2
CF
"Smer Dla_r MM
'Md -
1 2
1 2
1 2
1 2
TtaI Sea t SerS let ODile hh ta st. Mooal0Am C Da
1 2 aSn
Serme MR: Unable to speak or understwn
Maoderae MR: Couid communicate, not lIv Independently Mild MR: Could hold job and Hve Indepedntly -Develop svre painful daorder, Incumable Cleft palte, na ednes "Child is not sex desId by paret
FIGURE 2-Abortion for Fetal Characteristics (N = 271).
male and 13% had had a previous elective abortion. In all, 52% had been surgically sterilized (compared with 62% in a previous study3), 15% were either beyond reproductive age or no longer living with the child's other parent, and 33% were still fertile and at risk for having another child with CF. Although 27 persons did not respond to the question about abortion for CF in the first trimester or to other questions about abortion, there were no statistically significant differences between respondents and nonrespondents.
Results Responses are described in Figure 1 (maternal or family situations) and Figure 2 (fetal characteristics). The majority believed that abortion should be legal in all 23 situations during the first trimester and in 20 of the 23 situations during the second trimester (white bars). For all situations, fewer respondents approved legal abortion in the second trimester than in the first trimester, with an average difference of 11 percentage points. There was a steady gradation in personal acceptance of abortion (shaded bars), running from "mother's life in danger" down to "child would interfere with father's career" (Figure 1) and from "severe mental retardation" to "child is not of sex desired by parents" (Figure 2). Severe MR was the only fetal characteristic for which the majority (58%) would themselves abort (Figure 2). For CF itself, 20%
994 American Journal of Public Health
would abort in the first trimester, and 17% in the second trimester. In both Figures 1 and 2, 80% to 100% of those represented in a shaded bar are also represented in the shaded bars to the left. For example, of those who would abort for CF, 86% would also abort for moderate MR, 88% if the child would be bedridden for life, and 100% if the child would die before age five or have severe MR. An average of 9% fewer women would abort in the second trimester than in the first trimester for maternal or family situations, and an average of 5% fewer women would abort in the second trimester for fetal characteristics. Men made less differentiation between trimesters (6% for matemal situations and 1% for fetal characteristics). Characteristics associated at the zero-order level with personal willingness to abort are presented in Table 1. Men were more likely than women to say either that they would abort or that abortion should be prohibited by law. Men eschewed the middle ground of not aborting but permitting it for others. Gender was not related to any responses concerning fetal characteristics. For all maternal or family situations and all fetal characteristics except sex selection, attitudes toward abortion were associated with respondent's perception of attitudes of spouse, mother, father, and siblings toward abortion of a fetus with CF. The majority thought that their spouses (65%), mothers (60%), fathers (55%), and siblings (51%) would disapprove. These views were closely interre-
lated, with Pearson correlation coefficients of >.6. Family attitudes toward abortion for other disorders were not surveyed. In addition, the following variables (not reported in Table 1) were associated with abortion for CF: perceived approval of abortion for CF by father-in-law or mother-in-law, approval of abortion for CF by affected child or by other children, approval of abortion for CF by CF doctor or genetic counselor, and perceived absence of support from spouse, family doctor, or CF doctor for carrying a fetus with CF to term. Not associated with any attitudes toward abortion, including abortion for CF, were age, fertility status, marital status, number of children, CF child's health, future expectations about the CF child, cost of the child's illness, knowledge about prenatal diagnosis, interpretation of genetic risk, and reproductive intentions. No sociodemographic variables were significantly related to abortion for obesity, severe disorder at 60, susceptibility to alcoholism, treatable defect, or sex selection. Stepwise logistic regression analyses were performed for all abortion situations in Table 1. Characteristics strongly and independently related to willingness to abort (P < .10) are indicated. Some general patterns emerged from the regression analyses. Religious background was related largely to maternal or family situations, where traditional Catholic social values may remain, rather than to abortion for fetal characteristics. In many situations, those with higher education were more willing to abort than those with less education. Family attitudes were among the strongest factors related to personal abortion decisions. For persons living in a family context, it is difficult to make an abortion decision that contradicts the values of their spouses and extended families. Respondents' perceptions of their mothers' views were especially important for maternal or family situations. For spousal views, respondents' perceptions were accurate in the 43 families in which both spouses responded. Regression results for abortion for CF and severe MR are reported in Tables 2 and 3. Table 2 shows that parents' perceptions of the views of their CF doctors toward abortion for CF were significant. In all, 15% thought their CF doctorswould approve, 45% thought they would disapprove, and 40% thought they would be neutral.
August 1991, Vol. 81, No. 8
Abortion Attitudes among Parents of CF Children
Dicussion The major finding, that a minority of parents of children with CF (20%) would abort a CF fetus, suggests that prenatal diagnosis will not lead to a substantial reduction in the number of CF births among this group, at least in the United States. Most parents in this sample apparently do not regard selective abortion for CF as an
acceptable reproductive option, although they believe this option should be available to others. Many affected families may not welcome public health efforts to provide prenatal testing for CF. The majority of CF families may proceed as they did before prenatal diagnosis became available: they will either curtail reproduction (as many do) or take their chances. However, in the wider spectrum of abortion attitudes, the majority would abort for severe MR and many for a child bedridden for life. Optimism about CF was pervasive; families expected their child to reach age 40, hold a full-time job, and marry. With discovery of the gene for CF, optimism has probably increased. At the other end ofthe spectrum, few would abort for adult-onset disorders starting at age 40 or 60, for genetic susceptibility to alcoholism, or for sex selection, areas now receiving much attention. Although overall responses suggest that most would not use abortion frivolously,
August 1991, Vol. 81, No. 8
responses to the obesity question aroused our concern. Apparently, there is a not
insubstantial minority who would abort for cosmetic purposes if prenatal assessment were possible. The trimester of pregnancy had less relationship to personal willingness to abort than might be expected. For most fetal conditions, including CF, only 5% fewer women would abort in the second trimester than in the first. This result suggests that newer methods of prenatal diagnosis, such as CVS, which make firsttrimester abortions possible, may have little effect on deeply held attitudes.
In genetic counseling, it would be appropriate to acknowledge the effects of extended family networks on patients' views and to encourage patients to discuss the relationship between personal and family values. The attitude of the physician caring for the affected child may influence parents' decisions. Fewbelieved that their CF doctors would support abortion of a fetus with CF. Counselors should discuss these parental perceptions, which may reflect the clinically necessary optimism conveyed by pediatricians, rather than the doctors' actual views. Finally, the relationships between sociodemographic var-
American Joumal of Public Health 995
Wertz et al.
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