Abstract
Aims: Population-representative or population-based studies on attitudes toward molecular genetic testing have so far been conducted in the United States, Great Britain, the Netherlands, and Finland. In 2001 our group conducted a representative survey for a German population among a total of 2076 respondents aged 14-95 years. The questionnaire administered consisted of 13 items covering the advantages and disadvantages of molecular genetic testing for hereditary diseases. We conducted a factor analysis to explore potential sub-dimensions of attitudes, and describe here the influence of sociodemographic variables on these sub-dimensions and how the attitudes of the Germans compare to those of the Finns. Results: Our factor analysis of the results showed three dimensions: approval, disapproval, and concern regarding genetic testing. In the German sample we found an overall positive attitude toward genetic testing. There was no influence of sex, but there were marked differences regarding age, educational backgrounds, and religious affiliation. Finns are more in favor of genetic testing and disapprove less than Germans. We can summarize that Germans have a markedly more skeptical view than Finns. In our opinion this could well be understood in the context of German history. We assume that this created a less conducive environment for the population to form a clearer attitude toward genetic testing as compared to the Finns. Conclusions: In the light of our results there is certainly a need for more information and education. Further, it would in our opinion be most useful if the German development regarding attitudes to genetic testing, especially after reunification, is studied longitudinally to provide a better understanding of possible developments.
Introduction
A
Genetic testing in Germany
In Germany, public discussion about genetic issues is closely linked to the extermination of physically and mentally handicapped in the Third Reich (“racial hygiene”) (Lifton, 1986; Weiss, 1990; Burleigh, 1994). The Nazi-party utilized anxiety associated with allegedly bad genes of populations like Jews and Sinti Roma, or certain groups such as homosexuals. They introduced the thought that these people endanger every person in society. To protect the German population, they forced the view on the population that these people should be killed (Wüstner, 2002).
This situation changed with the separation into East and West Germany resulting in differing perceptions. In West Germany, both in textbooks and in public discussion, this subject had been suppressed for years. The government of East Germany declined to accept any responsibility for Nazi atrocities. They probably did this to try to deal with possible feelings of guilt (Witkowski et al., 1989).
In studies comparing East and West German attitudes, geneticists from both parts of Germany agree that experiences of the Third Reich have had an influence. The authors further state that different abortion laws, political systems, and different ideas about the doctor-patient relationship in former East and West Germany may have accounted for differences in genetic counseling practices and in attitudes toward abortion and disability. After reunification, public discussion about a new abortion law revealed a different attitude toward genetic testing that prenatal diagnostics were thought to lead to selective abortion (Cohen et al., 1997; Erikson, 2001, 2003; Kurmann, 2002).
Further, in Germany during consultation of the Bioethics Declaration by UNESCO (1997) basic values began to be questioned. The reason was that Germany, as compared to the United States, Canada, and Australia, has more restrictive positions on questions of genetics, stem cell research, and cloning (Benda, 2002).
Dörner (2002) describes an increase of genetic technology within biology. He points out that promises like increased productivity in genetically modified plants did not materialize. Instead, he argues that anxieties in consumers were raised. According to him, hopes that gene therapy might help to enhance medical therapy have not so far been fulfilled.
Genetic testing and medical conditions
With regard to certain medical conditions most studies on the acceptance of genetic testing were conducted among persons at risk, that is, mutation carriers with a manifest condition for their relatives. Conditions studied were as diverse as cancer (Bluman et al., 1999; Durfy et al., 1999; Hamann et al., 2000), Huntington's disease (Kreuz, 1996), cystic fibrosis (Henneman et al., 2001), deafness (Brunger et al., 2000), and psychological disorders (Trippitelli et al., 1998). The above groups favor the availability of genetic testing and express a high degree of willingness to undergo testing. This acceptance of testing should, however, be seen in correlation to actual participation in testing. As Faller (1997) and Keller (2000) pointed out, participation rates in case of an actual offer to perform genetic testing for cancer are markedly lower than acceptance rates obtained in studies posing hypothetical scenarios.
Studies using samples that are based on or are representative of the general population are far less numerous. Such data are, however, of great importance for the assessment of demand and the design of genetic counseling services. It is also of importance for the social discourse on the possibilities and limitations of molecular-genetic testing as well as for understanding the mechanisms of participation in genetic testing. Current models of health behavior, such as the Theory of Reasoned Action, take social attitudes such as these into consideration for factors shaping the individual decision (Schwarzer, 2002).
Existing population-based studies focus on interest in and acceptance of genetic testing mainly in connection with cancer (for exceptions, see, for example, Jallinoja et al. [1999] and Neumann et al. [2001]). Thus, Andrykowski et al. (1996) found that 93% of the women in their sample wanted to be informed if they had a genetic disposition toward breast cancer. According to Tambor et al. (1997), 69% of the women surveyed were interested in participating in prospective genetic testing. Interest is stronger among younger respondents and those with a higher educational achievement (Andrykowski et al., 1996; Tambor et al., 1997; Mogilner et al., 1998). Mogilner et al. (1998) found that a positive attitude toward participation in a gene test was mainly due to the belief that knowing the risks would aid the prevention and treatment of breast cancer and that it was important to be able to assess the risk for children. A negative attitude toward participation was connected to concern about negative psychological reactions, discrimination at the workplace, and insurance coverage. As Bosompra et al. (2000, 2001) were able to show, perceived advantages and disadvantages—both in terms of their effect on family members—had an influence on the subjective probability of participation in genetic testing to assess the risk of a cancer disposition. In one of the few studies based on the general population and assessing general opinions on genetic testing, Shaw and Bassi (2001) found a connection between acceptance of and interest in undergoing genetic testing. The authors showed predominantly positive attitudes toward genetic testing although respondents were aware of negative aspects and also voiced concerns such as that genetic testing for hereditary diseases could be harmful if performed by the wrong person.
Apart from the above-mentioned population-based studies, there are a small number of population-representative studies, which deal with the general acceptance of genetic testing rather than focusing on tests for specific diseases. In a U.S.-representative survey Singer et al. (1999) found that for the majority of respondents the advantages of genetic testing outweighed the disadvantages. Around two-thirds showed interest in a prenatal gene test.
Finnish data
In this study we will refer to the most comprehensive population-representative data on the acceptance of genetic testing that were obtained in Finland (Hietala et al., 1995; Aro et al., 1997; Jallinoja et al., 1998; Jallinoja and Aro, 2000). Ninety-four percent of the Finnish respondents supported the statement that genetic testing should be available to anybody who wished to have information about their genetic risk (Hietala et al., 1995). However, respondents also perceived disadvantages such as increasing abortion numbers or potential discrimination (Jallinoja et al., 1998). Clear differences were found regarding sociodemographic characteristics (Aro et al., 1997). Younger respondents were more open-minded toward genetic testing, men more in favor than women, and those with a higher educational achievement more skeptical than those with a lower level. In a follow-up study, Jallinoja and Aro (2000) found that respondents with a high level of knowledge of genetics showed the most positive attitudes, but, depending on the area in question, also the most skeptical attitudes toward genetic testing.
Objectives
In our previous papers (Berth et al., 2002a, 2002b, 2002c) we demonstrated results of a questionnaire using 13 items from the Finnish study (Jallinoja et al., 1998). Persons of a representative German sample were compared to a group of persons at risk of having a hereditary non polyposis colorectal cancer (HNPCC) disorder. Comparing the matched sample and the sample of persons at risk, only a few statistically significant differences emerge. Statistically significant differences were observed for one item. Only about 5% of persons at risk stated that there are more important public health problems; this compared to a quarter of the matched sample who agreed that genetic testing is not acceptable because other health care issues should be addressed first (Berth et al., 2002a). Overall, the results reveal that both the general population and the persons at risk hold a favorable attitude toward genetic testing. The comparison between medical students and a matched sample from the general population revealed significant differences in the general attitudes toward genetic testing. Medical students showed higher approval of gene tests. However, they also stated more concerns and acknowledged more clearly possible disadvantages of genetic testing (Berth et al., 2003).
Two-thirds of the German population is in favor of genetic testing and believes that such testing can reduce health service costs. However, 30% of the German population is opposed to genetic testing because it believes that there are more important issues the health system should deal with or it rather prefers a “natural order” (Berth et al., 2002b).
In this study we tested whether 13 questions can be grouped into three dimensions of the questionnaire assumed by the authors (approval, disapproval, and concern). The results of our previous studies regarding differences in favor of genetic testing between males and females and between younger and older persons should be replicated using the three factors. We will further test whether a higher level of education is related to more approval of genetic testing, and a more religious attitude to more decline of it.
We will further compare our German results to those of the Finnish study (Jallinoja et al., 1998). Our aim is to describe possible differences in attitudes between the German and Finnish sample and try to interpret these based on the specific German history.
Materials and Methods
The identification process of households to be used in this study was based on a compilation of household data of the German general election 1994 comprising 258 voting areas. Using a random start address (random/route/method) target households were identified within the voting areas. We identified one target person in the household using a random sample from a group of members of the household aged 14 years onward. In 2001 these persons were asked by an interviewer of the Unabhängiger Service für Umfragen, Methoden und Analysen Berlin (www.usuma.com) for biographic information and to fill in a comprehensive questionnaire, containing mostly psychodiagnostic tests. Nonnative speakers were excluded to avoid problems of the command of the German language. The response rate in the study was 68%.
Questionnaire
The survey instrument was a questionnaire from the Finnish study (Jallinoja et al., 1998) that had formed part of a comprehensive survey of attitudes toward genetic testing (Hietala et al., 1995; Aro et al., 1997). It consisted of 13 statements on genetic testing (Table 1), which were assessed by respondents using a five-point scale.
Items 1-4 represent favorable statements on genetic testing such as, “Genetic testing should be available to anybody who wishes to have information about her/his disease genes.” Items 5-9 are rejecting statements such as, “Genetic testing is not acceptable because the natural order should be respected.” Response categories for items 1-9 were fully agree (+2), partially agree (+1), partially disagree (−1), fully disagree (−2), and can't say (0).
Items 10-12 refer to concerns about potential disadvantages of genetic testing such as, “I am worried that the results could get into outsiders' hands.” Response categories for these items were not at all worried (−2), a bit worried (−1), somewhat worried (+1), very worried (+2), and can't say (0).
Item 13, finally, refers to a subjective feeling of control, stating that, “I am confident that I can myself decide which gene test to attend and how the results of gene tests are used,” which could be answered with fully confident, somewhat confident, a little confident, not at all confident, and can't say. (For the complete list of statements see Table 1.)
The questionnaire was prefaced by an instruction explaining that a number of diseases may be hereditary (due to gene mutations) and thus can be passed on from generation to generation. The instruction further pointed out that modern medical testing methods have made it possible to form a more reliable assessment of the individual risk for hereditary diseases such as Chorea Huntington or breast cancer. Finally, subjects were asked to state their own opinion by responding to the statements shown in Table 1.
Sample
The survey sample (see Table 2) with 2076 persons is representative for the German population in terms of age, sex, educational achievement, and urban versus rural location. The age range is 14-95 years.
Percentages may not add up to 100 due to rounding.
DM, German Mark (1 DM = 0.51 Euro).
Data analysis
We used factor analysis to answer which of these common aspects of the attitudes are relevant. Starting from an intercorrelation matrix of all questions this method enabled us to achieve a reduction of the intercorrelation matrix to independent factors. We calculated a factor analysis following the principal components method. We used the Scree test as a criterion to determine the numbers of the factors. The eigenvalues of the factors had to be greater than 1. The factors extracted by this were submitted to a Varimax rotation. We calculated the sums for each factor from all items loading over 0.40. We then used t-tests or U-tests to test differences in mean values of the sociodemographic variables.
To test the differences between the German and the Finnish population, we compared initially the three high-loading questions—the markers of the factors—in the German investigation with regard to these three questions in the Finnish investigation and then we compared the distributions of frequencies of three scales in both investigations using χ2-tests.
Results
Sub-dimensions of attitudes toward genetic testing
Correlations between the first four questions, which relate to agreement, are ranging from r = 0.58 to 0.67 (p = 0.01). The correlation between the questions 6-9, indicating disagreement, are significant, ranging from r = 0.52 to 0.68 (p = 0.01). The questions 10-12 correlate, ranging from r = 0.66 to 0.74 (p = 0.01). The remaining correlations between the questions are considerably lower: ranging from r = 0.07 to 0.39. Question 5 (genetic testing should not be performed at all) correlates with the questions 6-9: r = 0.24 and 0.28 (p = 0.001). There is a correlation with question 10 (r = 0.07) and 12 (r = 0.09). There are no significant correlations with questions 1-4.
One objective of the study was to identify the sub-dimensions underlying attitudes toward genetic testing. For this purpose, a factor analysis was performed on the 13 questionnaire items (principle component analysis, eigenvalues >1, Scree-test). Three factors could be extracted. Following varimax rotation the factors explained 65.1% of the variance (Table 1).
Based on the content of the statements with the highest loading, the factors were named as follows:
Approval (items 1-4; “Genetic testing is acceptable because …”) (explained variance 36.8%). The highest loading items are “Genetic testing is acceptable because people have the right to know about their genes so that they can influence their own health and life” (item 3) and “Genetic testing is acceptable because new technologies have made it possible to detect the underlying causes of genetic diseases” (item 4). Disapproval (items 5-9; “Genetic testing is not acceptable because … ”) (explained variance 16.9%). Item 7 loads “Genetic testing is not acceptable because the natural order should be respected.” Item 8 loads “Genetic testing is not acceptable because knowledge of the results may lead to discrimination against disease gene carriers.” Concerns (items 10-12; “I am worried that …”) (explained variance 11.5%). The marker variables are the items 10 (“I am worried that the results of gene tests can be used for scientific purposes without informing the person in question”) and 11 (“I am worried that the results could get into outsiders' hands”).
For each factor, a scale value was calculated by adding up the response scores across loading items and dividing the sum by the number of items. Item 13 was not included as it obtained relatively low loading values throughout and its content did not match the “approval” scale. The three scales that resulted show good internal consistency: approval, α = 0.87; disapproval, α = 0.79; concern, α = 0.83.
A higher positive score on one scale signifies higher agreement with the contents of the scale. Thus, a higher positive score on scale 2 (“disapproval”) indicates a stronger rejection of genetic testing. The possible score range extends from −2 to +2 for all three scales.
The mean values of the three scales are shown in Table 3, column 1. All three mean values on these scales divert considerably from a theoretical mean nil (t-test: p < 0.01): approval and concern toward a positive, and disapproval toward a negative direction. Approval and concern is considerably higher than disapproval (t-test paired samples: p < 0.0001). Scores on each of the three scales for various sub-samples based on sex, age (median split), educational achievement, and religious affiliation are listed in Table 3.
Attitudinal differences among sociodemographic groups
To determine how groups differ according to sociodemographic characteristics on these dimensions, three four-factor analyses of variance were performed based on the following factors: age, sex, educational achievement, and religious affiliation. Significant main effects were found for three of the four sociodemographic characteristics (Berth et al., 2002c). Older respondents (49 years and over) disapprove more strongly of genetic testing than those aged under 49 years. Those with a higher educational achievement score higher on approval and lower on disapproval than those with a lower educational achievement. Clear differences were found according to religious affiliation. The religiously affiliated approve less and disapprove more strongly, and are more concerned about the confidentiality of test results and the possible consequences of genetic testing. Religious affiliation is thus the strongest determinant of acceptance of genetic testing. No significant effect was found regarding sex, nor were there any significant interactions between sex and the other sociodemographic characteristics.
Comparison between Germany and Finland
To study the differences between Finnish and German results, we compared first the distribution of frequencies of the marker variables of the dimensions. We further compared the distribution of frequency of the three dimensions “approval,” “disapproval,” and “concern.”
Regarding the three marker variables, the Germans differ from the Finns (Table 4). Double the number of Finns as compared to the Germans are in favor of genetic testing. They argue that we all have the right to know about our genes (item 3). Using this explanation, only 3.6% of the Finns disagree with genetic testing as opposed to 27.7% of the Germans.
Item 3, χ2 = 669; item 7, χ2 = 323.17; item 11, χ2 = 988; df = 3.
Worried a bit/a lot.
Not worried at all.
D, Germany; SF, Finland.
Regarding the item disapproval (item 7) 59.8% of the Finns as compared to 31.8% of the Germans state that genetic testing is unacceptable because one should respect nature.
The German and Finnish results regarding concerns are very similar. To an overwhelming majority, Germans as well as Finns are “somewhat” or “very” worried about the unauthorized passing on of results to third parties (item 11: 77.9% in Germany vs. 84.9% in Finland); 56.9% of the Germans are worried in such a way as compared to 28.9% of the Finns (Table 4).
After that, the three scales “approval,” “disapproval,” and “concern” were compared in both studies regarding their distribution of frequency.
To achieve that, we calculated the middle percentage of frequency for each scale (fully agree, partially agree, disagree/fully disagree, and cannot say) (Table 5). To determine how the distribution of frequencies differs between Germany and Finland, we used χ2-tests.
Percentages were rounded to nearest whole number and may not add up to 100 due to rounding.
Approval, χ2 = 2058; disapproval, χ2 = 2464; concern, χ2 = 2561; df = 3.
Worried a bit/a lot.
Not worried at all.
In all three scales we found highly significant differences in the distribution of frequencies between Finns and Germans. Agreement with genetic testing is much more explicit in Finns than in Germans (90.2% vs. 59.0%). The opposite applies to disagreement (disapproval). Worries are high only in Germans (55.1% vs. 17.5%) (Table 5).
Discussion
We analyzed a representative sample of the German population comprising 2076 persons regarding their attitudes toward genetic testing. Some aspects have been published (Berth et al., 2002a, 2002b, 2002c). In this study we asked if the 13 items regarding genetic testing used in the previous study could be grouped further. We compared our results to those of the Finnish study of Jallinoja et al. (1998).
We were able to extract three dimensions: approval, disapproval, and concern. This is against the hypotheses of the Finnish group. Hietala et al. (1995) supposed a two-factor structure, and also Jallinoja et al. (1998) mentioned that there could be a two-factor structure. Our result may be a consequence of how questions were formulated, because we specifically asked for acceptance versus nonacceptance, and which things the people are worried about. On the other hand, the first two aspects are independent and thus not extremes within one dimension.
Compared to the Finnish data (Hietala et al., 1995; Aro et al., 1997; Jallinoja et al., 1998), our data reveal considerable differences both in comparing frequencies of marker variables and of the dimensions “approval,” “disapproval,” and “concern.” Finns are more in favor of genetic testing and disapprove less than Germans. Both, however, have similar frequencies of concerns. The frequencies of dimensions “approval,” “disapproval,” and “concern” differ highly significantly: When it comes to genetic testing, Finns agree more, disagree less and are less worried than Germans.
Another difference we found is the higher frequency of “can't say” responses and the German tendency to voice their opinion less radically than the Finns. Matschinger and Angermeyer (1996) described “can't say” responses in their representative study. This response is an important category, which in their view is an indicator for a skeptical attitude toward the survey topic.
In our German sample we were able to identify a slightly positive attitude toward genetic testing. This pattern confirms the results of Shaw and Bassi (2001), who describe predominantly positive attitudes toward genetic testing although respondents also voiced concerns. There was no influence of sex regarding attitudes to genetic testing. However, marked differences were found regarding age, educational backgrounds, and religious affiliation. These findings confirm studies that showed more interest in genetic testing in younger respondents and those with a higher educational achievement (Andrykowski et al., 1996; Aro et al., 1997; Tambor et al., 1997; Mogilner et al., 1998; Jallinoja and Aro 2000).
We can summarize that regarding genetic testing Germans agree less, disagree more, and are more worried and have a markedly more skeptical view than Finns. The latter applies to their tendency to voice agreement/disagreement, to speak less clearly about the risk of potential discrimination or higher abortion numbers, and the availability of genetic testing.
A similar attitude was described in an earlier study and linked to concerns about negative psychological reactions and discrimination (Mogilner et al., 1998).
In our opinion this could well be used to interpret our results. Within the context of German history a reminder of negative psychological reactions and of discrimination (Lifton, 1986; Weiss, 1990; Burleigh, 1994) might still be accounted for. The Finns on the other hand had a more conducive environment for their population to form a less skeptical attitude toward genetic testing.
Further, the skeptical response could be understood as an uncertainty in the German population as to whether they are allowed to express openly their attitudes toward genetic testing. Michie et al. (1995) show that it is often the researchers that take a more positive stance toward the potential of genetic testing than the general public. The authors stress that public opinion cannot be ignored unless service structures are created that correspond with actual needs. Maybe in that sense the German general public has further to go.
We also think that it is important to take into consideration that while media communicate virtually limitless applications of gene technology and genetic testing (Petersen, 2001), a number of studies have revealed the scant knowledge of genetics and genetic testing among the public in undergoing genetic testing (Henderson and Maguire, 1998; Press et al., 2001). In the light of this and taking the results of our German-Finnish comparison into consideration, there is certainly a need for more information and education (Fraser, 2001). Further, it would in our opinion be most useful if the German development regarding attitudes to genetic testing, especially after reunification, is studied longitudinally to reach a better understanding of possible developments.
There are criticisms of our study: First, the stability of the results of our German study is difficult to assess accurately. It would be desirable to have further measurements by means of a repeat study. Second, we have to consider possible differences between a person's attitude and behavior. Due to the lack of correlation between attitudes and behavior we cannot predict whether a negative attitude results in declining genetic testing. Third, we have to mention the creation of dimensions. Their validity should be tested using confirmatory factor analysis with a further set of data.
Footnotes
Disclosure Statement
No competing financial interests exist.
