Attitudes of German infertile couples towards preimplantation genetic diagnosis for different uses: a comparison to international studies
1 Department of Medical Psychology and Medical Sociology, University of Leipzig, Philipp-Rosenthal-Str. 55, 04103 Leipzig, Germany 2 Institute of Medical Psychology, University Hospital of Jena, Stoystrasse 3, 07740 Jena, Germany 3 Fertility Center Berlin, Women's Hospital, Spandauerdamm 130, 14050 Berlin, Germany
4 Correspondence address. Tel: +49-30-822-3863; Fax: +49-30-30354409; E-mail: dr.borkenhagen{at}web.de
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Abstract |
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BACKGROUND: In Germany, preimplantation genetic diagnosis (PGD) is currently not legal, but there is still a controversial debate about legalization. Studies about the attitudes of infertile couples towards PGD are rare.
METHODS: A survey was conducted with 265 German infertile couples about knowledge, attitudes and prospective use of PGD. The influence of independent variables associated with approval of PGD is analysed by binary logistic regression.
RESULTS: Sixty percent of respondents have heard about PGD. Eighty-seven percent support a general legalization of PGD in Germany for severe, early-onset genetic diseases. Seventy-four percent consider PGD morally acceptable. Sixty percent supported legalizing PGD for HLA-matching. But only a minority approved PGD to test for non-health-related traits. Respondents with a higher education level were the least supportive to all uses of PGD.
CONCLUSIONS: Our results suggest that German infertile couples are as liberal towards PGD for health-related uses as in other western countries. They would legalize and use PGD to raise the rates to get pregnant and to avoid severe diseases of the offspring. Taking the opinions of German infertile couples into consideration could help redefine and reframe the public debate towards legalization of PGD and the moral status of the embryo in Germany.
Key words: attitudes/aneuploidy/preimplantation genetic diagnosis
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Introduction |
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Preimplantation genetic diagnosis (PGD) has not only been used for detecting hereditary diseases by couples at risk; it has also been used in the setting of assisted reproductive technology (ART) to reduce the risk of spontaneous abortions in couples carrying translocations (Shenfield et al., 2003
) and to improve the effectiveness of assisted reproduction in poor prognosis patients, such as women of advanced age (Shenfield et al., 2003). PGD for aneuploidy screening (PGD-AS) to improve implantation and pregnancy rates is probably the most frequently used application for PGD. This technique is expensive though, and some normal embryos might be lost, due to the error rate.
In Germany, PGD to identify genetic abnormalities in preimplantation embryos prior to embryo transfer is currently not legal, but there is considerable controversy about government regulation. The German debate is focused on the potential hypothetical ‘eugenic’ implications of PGD and the moral status of the embryo, which must be seen against the historical background concerning eugenics during Nazi Germany. Different groups of German society have participated in this debate, but studies are very rare about the attitudes of couples at high risk and infertile couples, who are the most affected. In consequence of the restricted Embryo Protection Law (‘ESchG’), the number of infertile couples who go abroad for undergoing PGD has increased. Hoffmann et al. (2003) surveyed couples at risk for transmitting a hereditary disease to their offspring and reported that 18% of these couples intended to utilize PGD abroad. Also, the head of the Federal Association of German Centers for Reproductive Medicine stated that PGD tourism increased in Germany continuously (Nippert, 2006) because of the low pregnancy rate in Germany. In 2003, new legislation on reproductive technologies was implemented in Italy that has many similarities to the restrictive regulation of new reproductive technologies. Would German infertile couples accept and use PGD like the vast majority of infertile couples in international studies do? Are German couples informed about the different uses of PGD? Which applications of PGD do German infertile couples find appropriate, and will they use PGD as a prospective personal reproduction option, if it is legalized in Germany? Until now, large studies have been very rare about the level of information and the attitudes of German infertile couples towards these controversial debated topics. In one of the first large studies conducted on these topics, we compare the knowledge and attitudes of German infertile couples on these issues to the results of international studies.
Previous international studies have shown two main points. First, there is overall high general approval of PGD by couples at high risk (Pergament, 1991; Miedzybrodzka et al., 1993; Palomba et al., 1994; Snowdon and Green, 1997; Chamayou et al., 1998; Hui et al., 2002; Lavery et al., 2002; Hoffmann et al., 2003) and of PGD-AS by infertile couples (Miedzybrodzka et al., 1993; Palomba et al., 1994; Chamayou et al., 1998; Katz et al., 2002; Lavery et al., 2002; Hoffmann et al., 2003). Second, infertile patients have low concern about the extension of the technology to testing for HLA-matching (Katz et al., 2002) and for non-health-related traits like social sexing (Katz et al., 2002).
Eight of nine international studies about the attitudes of infertile couples towards PGD also evaluated the intention to use PGD or prenatal diagnosis (PD) as a prospective reproductive option by women at risk (Pergament, 1991; Miedzybrodzka et al., 1993; Palomba et al., 1994; Snowdon and Green, 1997; Chamayou et al., 1998; Hui et al., 2002; Lavery et al., 2002; Hoffmann et al., 2003). In four of these studies, more than the majority of women at risk (52–77%) intended to use PGD as a reproductive option (Pergament, 1991; Palomba et al., 1994; Snowdon and Green, 1997; Lavery et al., 2002); whereas, in the other four studies, less than the majority (17–38%) would have chosen PGD as a prospective reproductive option (Miedzybrodzka et al., 1993; Chamayou et al., 1998; Hui et al., 2002; Hoffmann et al., 2003). In general, women with an affected child (Pergament, 1991; Miedzybrodzka et al., 1993; Palomba et al., 1994; Chamayou et al., 1998; Hui et al., 2002; Lavery et al., 2002; Hoffmann et al., 2003) or a subfertility problem (Hui et al., 2002) are more willing to use PGD as a reproductive option. In previous studies, obstetric history, especially the length of infertility, was the main factor, which determined the choice of PGD as a future reproductive treatment by infertile couples.
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Materials and Methods |
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A total of 265 consecutive unselected infertile couples who were treated at the ‘Berlin Fertility Center’, a university hospital tertiary level fertility clinic, were surveyed from October 2003 to January 2005. The patients were at all stages of treatment: some were primary consultations for infertility; others were returning for review after one or multiple treatments. The study was approved by the National Medical Ethics Committee.
The survey comprised several types of questions. The first section ascertained baseline demographic characteristics, including age, sex, level of education, employment, religious affiliation, length of infertility treatment, desire for a child and being affected by a hereditary disease. Detailed information about the sample is summarized in Table 1.
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We previously conducted 15 intensive qualitative interviews with infertile couples, in order to explore all relevant aspects for the target group. On the basis of those interviews, we constructed a standardized questionnaire. The questionnaire assessed the respondents' level of knowledge about PGD and quantified their level of approval of using PGD for various purposes: (i) fatal childhood disease, (ii) early-onset genetic disease, (iii) genetic disposition with heightened risk of developing a disease, such as cancer or severe obesity as an adult, (iv) sex selection and (v) embryo selection for genetic characteristics unrelated to health, such as intelligence or hypothetical sexual orientation. The prospective personal use of PGD for these various uses was also assessed. The respondents' opinions about PGD-AS and PGD for HLA-matching was evaluated. The final question assessed their attitudes towards the moral acceptability of PGD and PD.
We previously designed a short-information sheet that describes the PGD technique in general in five short sentences. This information sheet and the questionnaire were pre-screened for neutrality and comprehensibility in a sample of unselected students of the Free University of Berlin.
A binary logistic regression analysis was performed with SPSS 12.0 (SPSS Inc., Chicago, IL, USA), in order to assess independent demographic and medical factors associated with the attitudes towards PGD for various uses.
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Results |
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Two hundred and sixty-five infertile couples completed the survey for an acceptable response rate of 87.68%. The females had a mean age of 34 (range: 22–46); the males had a mean age of 36 (range: 22–56). More information about the sample is summarized in Table 1.
History of assisted conception treatment
Fifty-three percent of the infertile couples had been under treatment for infertility for 
1 year, 29% for 1–2 years and 18% for 
2 years.
Desire for a child
When asked about the desire for a child, 52% of the women and 44% of the men indicated a very high level of desire for a child; 43% of the women and 46% of the men reported a high level of desire for a child, and 5% of the women and 9% of the men indicated a middle level of desire. There was no significant difference in the level of desire for a child between women and men.
Level of personal information about PGD
About 60% of our respondents (women = 60%, men = 59%) stated that they had heard about PGD previously; whereas, about 40% (women = 40%, men = 41%) reported having no previous information. Age and level of education were significantly associated with being informed about PGD, whereby younger and more educated respondents were more often informed.
General approval of PGD
There was a high overall approval of PGD by the vast majority of German infertile couples: 96% support general legalization of PGD. Regression analysis showed no link between approval of PGD and any independent variables, such as sex, religion, level of desire for a child, length of infertility treatment or being affected by a hereditary disease.
Approval of PGD for various uses
Most infertile couples support legalization of PGD for severe, non-treatable, early-onset genetic diseases. More specifically, 93% of the respondents approved an application of PGD in the case of a disease where the child dies during the first year. But 84% also favoured PGD for screening for chronically disabling disease where the person dies in early adulthood or for Downs' syndrome. About half of the couples (49%) viewed using PGD to identify a predisposition for cancer as appropriate; whereas, only 8% considered PGD appropriate to avoid severe obesity. The vast majority of subjects disapproved of the use of PGD for non-health-related reasons. Only a minority of survey respondents favoured PGD for screening for non-health-related traits such as under-average intelligence (10%), hypothetical sexual orientation of offspring (homosexuality) (4%) or sex selection for family balancing (2%) (Fig. 1).
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There was no significant link between any independent variable, such as sex, religion, level of desire for a child, length of infertility treatment or being affected by a hereditary disease, and the approval of legalization PGD for severe, non-treatable, early-onset genetic diseases. In contrast, approval of PGD for detecting a genetic syndrome like Downs' syndrome (Table 2) or predisposition to develop cancer as an adult (Table 3) were influenced by education, whereby lower education was associated with approval of screening for adult risk of cancer or severe obesity (Table 4), and higher education was associated with disapproval of screening for Downs' syndrome. The approval of sex selection for family balancing and screening for under-average intelligence was not related to any of the independent variables. In contrast, there was a statistically significant difference between participants who had and who did not have religious affiliation and the approval of PGD to test for hypothetical sexual orientation (homosexuality), if it were possible, whereby respondents who had a religious affiliation were more permissive towards legalization of PGD for this reason than respondents who did not have a religious affiliation (Table 5).
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PGD for HLA-matching
The majority (60%) of surveyed infertile couples thought it would be appropriate to legalize PGD in Germany for screening embryos to determine whether they will have tissue that matches a sick sibling. The approval of legalizing PGD for this medically-related reason was associated only to religious affiliation, whereby respondents who had a religious affiliation were less permissive towards legislation of PGD for this reason (Table 6).
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PGD for AS
The vast majority of infertile couples (83%) supported legalization of PGD-AS to detect chromosomal abnormalities in embryos in Germany (Table 7). There were statistically significant differences in approval of legalizing PGD-AS, whereby respondents with higher education level were least supportive of allowing PGD-AS for this reason. The level of desire for a child was inversely associated with a greater likelihood of approval for allowance of PGD-AS. There was no significant link between the other independent variables, such as age, sex, length of infertility treatment, religion or being affected by a hereditary disease and the approval of legalization of PGD-AS.
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Prospective personal use of PGD for different purposes
As Figure 2 shows, the general approval for legalization of PGD for medically-related indications is higher than the prospective personal use of PGD. A majority of respondents intended to use PGD for early-onset genetic diseases and disturbances: 86% would use PGD to detect a disease where the child dies during the first year, 81% for avoiding Downs' syndrome and 77% to assess a chronically disabling disease. In contrast, the prospective personal use of PGD to test for adult-onset genetic disease and predisposition was clearly less supported by infertile couples: only 39% of the respondents intended undergoing PGD to detect a predisposition for cancer and 6% a predisposition for severe obesity.
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There is an overall quite low demand by infertile couples for using PGD for non-disease-related traits. If it were possible, 10% of respondents would use PGD to detect below-average intelligence, 2% to exclude hypothetical sexual orientation of offspring (homosexuality) and 1% to select the sex for family balancing.
Level of education is associated with a greater likelihood of disapproval of prospective personal use of PGD for all medically-related indications, such that a higher level of education is related to less support of personal use of PGD to test for early-onset genetic diseases [disease where the child dies during the first year (Table 8)], chronically disabling diseases (Table 9), Downs' syndrome (Table 10) and for adult-onset disease like cancer (Table 11). Using PGD to detect severe obesity was only related to sex: men are significantly more supportive than woman of using PGD for this purpose (Table 12).
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The prospective personal use of PGD to test for hypothetical sexual orientation (homosexuality), if it were possible, is related to the independent variables of age and length of infertility treatment. Higher age is associated with greater willingness to use PGD for this purpose, but length of infertility treatment is inversely related to it (Table 13).
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Ethical comparison of PGD and PD
The vast majority of German infertile couples consider PGD (74%) as morally acceptable technology. The consideration of PGD as morally appropriate technology is related to the level of education, whereby respondents with higher education level consider PGD less morally appropriate (Table 14).
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Discussion |
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TopAbstractIntroductionMaterials and MethodsResultsDiscussionAcknowledgementsReferences |
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Compared to studies of other western countries, German infertile couples show a similar high general acceptance of PGD. More specifically, German infertile couples show higher approval of PGD (92%; Krones et al., 2005
) (96% of the present study) than infertile couples from Italy (87%) (Chamayou et al., 1998), or from the UK (70%) (Miedzybrodzka et al., 1993), but they are comparable to infertile couples from Australia (95%) (Katz et al., 2002). Like infertile couples in other western countries, the vast majority of German infertile couples would use PGD to test for severe, early-onset genetic disease (86% in the present study). In comparison to previous international studies, the prospective personal use of PGD by German infertile couples is lower than prospective use of this technology in Italian infertile couples (96%) (Chamayou et al., 1998) but higher than in infertile couples of Hong Kong (71%) (Hui et al., 2002) and infertile couples of the UK (70%) (Miedzybrodzka et al., 1993). Similar to the results in studies in other countries, the vast majority of German infertile couples (74%) perceive PGD as morally acceptable technology for detecting severe genetic-related diseases and disorders. Only Katz et al. (2002) asked for using PGD for non-health-related traits like sex selection for family balancing. Sixty-nine percent of Australian infertile couples are in favour of sex selection for family balancing, whereas, the majority of German infertile couples support prohibition of PGD for this purpose. German infertile couples seem to be at least as liberal towards PGD for disease-related purpose as infertile couples in other western countries. Furthermore, our results show that the acceptance of PGD by German infertile couples is related to the severity of the anticipated disease. If the disease is fatal and has an early-onset, our respondents were more likely to view using the technology as appropriate. In contrast, there was less approval of testing for predispositions, such as cancer or diseases influenced by behaviour. A majority of the surveyed German infertile couples also think it is appropriate to use PGD for testing embryos to determine whether they will have tissue that matches a sick sibling. Almost the entire sample of German infertile couples disapproved of using PGD for non-disease-related purposes. Selection of non-health-related traits, such as sex for family balancing—is currently not an issue for German infertile couples. Thus, our findings suggest that the main interest of German infertile couples is presently to become pregnant and to have a healthy child. Having children that are free from genetic disease is a laudable goal for the majority of our surveyed respondents.
The result that the level of education has an overall significant negative impact on the approval of disease-related application of PGD could be interpreted as meaning that respondents with more education are more concerned about the long-term implications of reproductive genetic tests and how widespread use will affect society. The higher disapproval of using PGD by more educated respondents may also be a consequence of the German Nazi history and the fact that more educated respondents are more influenced by the German experience of eugenics. Our results give hints that PGD for non-health-related traits in children is currently against the basic moral common sense of German infertile couples and also of the German public (Meister et al., 2004; Krones et al., 2005). A nationwide survey would be required to determine whether fertile couples would undergo IVF for the sole purpose of PGD for detecting non-health-related traits in children.
The following conclusions, which are particularly relevant to the controversial debate about legalization of PGD in Germany and other European countries such as Italy, can be drawn from the comparison of our results with studies from other countries. First, our results suggest that German infertile couples would legalize and use PGD to raise the rates of pregnancy and to avoid severe genetic-related diseases in the offspring. They believe that disease-related use of PGD is morally appropriate.
Moreover, our results suggest a general consensus of German infertile couples, the German public (Krones et al., 2005; Meister et al., 2004), and the majority of commission of the National Ethics Council (2003) against the prohibition of PGD on the basis of the current German Embryo Protection Law. The National Ethics Council recommended legalizing PGD in Germany for severe, life-threatening, early-onset genetic diseases as well as PGD-AS. As a consequences of ignoring the approval of health-related use of PGD and PGD-AS by German infertile couples, the German public, and most experts who work in the field, more and more German infertile couples are going abroad for PGD and ARTs (Nippert, 2006). Taking into consideration, the opinions of German infertile couples could help redefine and reframe the public debate towards legalization of PGD in Germany.
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Acknowledgements |
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The results of this study come from the research project, ‘Knowledge and Attitudes towards Controversial Medical and Ethical Issues in Reproductive Medicine and Preimplantation Genetic Diagnosis (PGD)’ supported by the German Federal Ministry of Education and Research (BMBF, registration number: 01G0205/0255). Some instruments were developed in co-operation with the University of Marburg, Center for Conflict Studies (Dr T. Krones and Professor G. Richter).
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References |
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Submitted on July 31, 2006; resubmitted on February 8, 2007; accepted on February 13, 2007.
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