pp. 235-241 in Intractable Neurological Disorders, Human Genome Research and Society. Proceedings of the Third International Bioethics Seminar in Fukui, 19-21 November, 1993.

Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.


Copyright 1994, Eubios Ethics Institute All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with Eubios Ethics Institute.

Human genetics and ethics education in the high school classroom

Karen Beck & Joann Bodurtha
Medical College of Virginia, Virginia Commonwealth University, Richmond, VA, USA.


Introduction

Graduate students in the Department of Human Genetics often give presentations to high school groups about clinical aspects of genetics when a request is made from the community. Slides may effectively demonstrate genetic conditions, and the department has a collection for student use. Many of these are used to point out specific features of a disorder to graduate students, medical students and professionals. They are purposely clinical, and focus on the specific disorder. The person depicted is usually unclothed, unsmiling, and positioned so that desired features can been seen. The pictures are unflattering and rarely capture the personality of the individual, as that is not the intent.

The experience of giving several programs in high schools and middle schools made it clear that many of these slides were inappropriate for use with certain groups. Students sometimes reacted to the pictures with shock or embarrassed laughter. Teachers usually request a program to supplement a general genetics unit covered in class, which includes a study of Mendel's laws, inheritance patterns of common traits, using pedigrees and Punnett squares, and probability. A clinical presentation involves genetic and teratogenic disorders, i.e., diseases and disfiguring conditions. These are by definition unpleasant topics. Affective as well as cognitive components need to be taken into consideration by the presenter. The choice of materials to use in such a program has an impact on the viewers.

Providing a meaningful program to young people is a unique cross-cultural experience and a challenging prospect. It was hoped that using pictures from their culture (rock groups, movie and sports personalities ) to point out physical features could increase their interest and bring the program into their world. Pictures taken from popular magazines, as well as the "family photo" pictures of people with disabilities were collected for the project.

It was decided to evaluate a presentation using these slides with a measure of affect rather than a test of knowledge gained. The presentation was not about teaching specific information, but about medical application of genetic principles. Affect and attitude are important aspects of a medical presentation. A self-report pre- and post-test survey was chosen as an instrument to detect changes in attitude as a indirect estimation of affect.

In an attempt to ascertain some areas of student interests in Medical Genetics and what kinds of presentations they might prefer, an open-ended questionnaire was given to 10 members of Chain Reaction, a service organisation of high school students coordinated by Debbie Teeter, director of the March of Dimes in Richmond. This group has a special interest in supporting and working with children with disabilities. Only one of the students did not know someone with a disability.

All students indicated having some interest in ethical discussions. Several were interested in gene splicing and DNA studies, and the majority mentioned heredity and birth defects. To the question "How do you feel about showing pictures of children with serious deformities to the class? Would it bother people? " one member wrote that he/she did not think anyone would be bothered. Another wrote, "I think you should warn people first and allow them to decide." Eight students thought that it may bother some people. Seven of these added that although some might be made uncomfortable, such pictures helped to "make a point" or "help people see the reality of the disorders."

Methods-Survey

Subjects

An attitude survey was administered to 206 high school science students before and after a genetics presentation (quasi-experimental, pretest-posttest format). The study group was a convenience sample consisting of students from two public high schools in suburban Richmond, Virginia. Students from high school M (n=112, 6 classes) were 10th and 11th grade biology students who had just completed a unit on genetics. The majority of the students at high school T (n=94, 4 classes) were in 10th and 11th grade, although a few were 9th or 12th graders. All were enroled in a psychology course. The sample included students across academic levels at both schools.

Instrument

An adapted form of Siller's Disability Factor Scale-General (DSF-G) was used in this study. The DSF-G is a 69 item Likert-type self-report questionnaire developed in 1967 by Siller, Ferguson, Vann and Holland to measure several dimensions of attitudes toward individuals with functional and visual disabilities. Assumed attributes, personal reactions and assumed reactions of others toward persons with disabilities, and policy orientation are addressed in the items (1). Validity and reliability were established by Siller, et al. and other researchers. Weisel et al. more recently adapted the scale across cultures (2) and modified the items to measure attitudes toward males vs. females with disabilities (3).

In order to have a questionnaire that would take a few minutes at the end of a presentation the number of items was reduced from 69 to 12. There was an attempt to keep a balance in the type of question relative to assumptions and policies. Question number 4, " Blind people can play the piano especially well" was deleted after the first trial with the survey. Some of the students indicated that it tended to trivialize the intent of the questionnaire.

Intervention

The presentations consisted of two parts. The first, and main, topic in each case was a specific talk requested by the teacher. The teacher at high school M asked for a presentation about medical genetics to supplement a unit on heredity. The psychology teacher at high school T asked for a program about preventable birth defects. A similar talk had been presented there the previous year. The program, "Preventable Birth Defects", included a short discussion about fetal and maternal rights and substance abuse, which took place after completion of the posttest scale. These students were also scheduled to have outside speakers address birth control and sexually transmitted diseases.

The second part of the presentation was the specific intervention. A 10 minute slide show about young adults with genetic conditions was given at the end of the first section. Pictures of individuals with epilepsy, blindness, and physical disabilities were shown. These were taken from two books by Jill Krementz: How It Feels To Live With a Physical Disability (4), and How It Feels to Fight For Your Life (5). At least two slides of each young man or woman were used to show them with their families and friends in everyday situations. The intent was to present them as they really are - people very much like the students in the audience - who happened to have a genetic condition that could be disabling or disfiguring.

Procedure

The teachers agreed to administer the questionnaire (pretest) 1-2 weeks prior to a presentation about Medical Genetics. The survey was voluntary and anonymous. A posttest was given by the presenter immediately following the program. To facilitate the process of administration and collection of the surveys, no attempt was made to match pre- and post-tests.

Results

Scoring

In scoring Siller's original survey each question was given a load depending on the category of the question. Explicit scoring data was unpublished. Two methods for evaluating the survey results were developed for this study.

1) Numerical: Total score. The wording of most of the questions was such that "6" (strongly disagree) was a response reflecting an accepting attitude. Numbers 5, 6, 9, 12 were oppositely worded, so that "1" (strongly agree) was a positive response. Values circled by the students were totalled with the exceptions of numbers 5, 6, 9, 12. These were assigned their reciprocal value, e.g. 6=1, 5=2, 4=3, 3=4, 2=5, 1=6. Possible scores ranged from 11 to 66, with a higher score indicating a more positive attitude toward individuals with disabilities.

2) Agree/Disagree: Questions were evaluated individually for agreement (1,2,3) or disagreement (4,5,6).

Statistical Analysis

1) Total Score: An analysis of variance (ANOVA, SAS System) was carried out over the full data set using the total score as the dependent variable. Scores ranged from 26-66, with good variation in answers chosen. Table 1 shows that independent variables were School (T or M), Gender, Knowing some with a disability (know, not know), Relative with disability, and Test (pre- or post-).

Significant effects were found with gender (df1, T=2.545, p<0.0113) and Knowing (df1, T=3.815, p<0.0005). The variance between pretest and posttest total scores (Test) was not significant ( df1, T= -0.074, p<.9371) so that the full data set (n=386) artificially enlarged the sample population (n=206).

Table 1: Demographics
High School T 182 responses 47%; High School M 205 responses 53%
Males 159 responses 41%; Females 228 responses 59%

Know someone with a disability? Yes 319 (82%) No 68 (18%)
Relative with a disability? Yes 158 (41%) No 229 (59%)

PRETEST: 201 responses Mean score= 49.6; POSTTEST: 186 responses Mean score= 48.1;

INDEPENDENT VARIABLES: School, Gender, Know someone with a disability, Relative with a disability, Pre-post test

Significance was determined by analysis of variance (SAS). Only "Gender" and "Knowing someone..." showed statistically significant correlations with score. VARIABLE SD PROB >|T|;

School 0.7168 0.8204

Gender 0.7394 0.0113

Know 1.0121 0.0005

Relative 0.7902 0.2772

Test 0.7139 0.9371

ANOVA using the pretest data (n=206) separately supported the hypothesis that people who know someone with a disability have more positive attitudes toward people with disabilities in general than those who do not know someone with a disability. (Knowing-df1, T=2.889, p<0.0043). Variance by gender was not statistically significant. (df1, T=1.894, p<0.0596) using this sample.

2) Agree/Disagree: Tables 2 and 3 shows the overall percentages of agreement and disagreement with each statement. Chi square statistics were computed for each of the 11 items individually to analyse pretest and posttest differences by sex and by knowledge. Although differences in pretest and posttest scores were not significant statistically, several items examined individually reflected significant change the pre- and post-test data, as well as variation with knowing and gender.


Table 2: Results of the survey: Agree; Disagree;

Other questions are given in Table 3.

5. People with epilepsy are just as intelligent as everyone else. 90% 10%

6. I think if I became blind I could make a pretty good adjustment. 46% 54%

7. I would be unhappy if a good friend of mine thought of marrying a person with epilepsy. 10% 90%

8. There should be laws against marriage between two people who are mentally retarded. 4% 96%

11. If I were missing an arm or leg I would feel like hiding and avoiding people. 47% 53%


Looking at gender, it was found that males and females differed on their answers to statement 2, "I would not adopt a child who is paralysed." in both the pretest and the posttest. (df1, pre- X =12.418, p< 0.000; post-X=5.696, p<0.017). Females disagreed with this statement more often than males.

Chi square for item 9, "People who are missing an arm or a leg are just as capable as anyone else." revealed that after the presentation fewer males than females agreed with the statement, although in general the majority of both sexes gave a favourable response (df1,X =6.186, p<0.013).


Table 3: Questions and Analysis of Results: AGREE; DISAGREE;

1. I feel uneasy when I'm near someone missing an arm or a leg.
Pre 38% 62% (know someone)
0.107 53% 47% (not know)
Post 35% 65% (know someone)
0.015 56% 44% (not know)

In the post-test, a significantly higher percentage of students who do not know someone with a disability agree with the statement.

2. I would not adopt a child who is paralysed.
Pre 65% 35% (male)
0.000 40% 60% (female)
Post 67% 33% (male)
0.015 50% 50% (female)

A significantly higher percentage of female students than male students disagrees with the statement in both pre- and post-tests.

3. People with severe mental retardation ought to be kept apart from the normal community.
Pre 07% 93% (know someone)
0.043 19% 81% (not know)
Post 07% 93% (know someone)
0.001 24% 76% (not know)

A significantly higher percentage of students not knowing someone with a disability agreed with the statement in pre- and post-tests.

Pre 13% 87% (male)
0.096 07% 93% (female)
Post 13% 87% (male)
0.063 05% 95% (female)

Although a statistically significant level was not reached, there may be a trend for a higher percentage of males than females to agree with the statement.

9. People who are missing an arm or a leg are just as capable as anyone else.
Pre 78% 22% (male)
0.085 87% 13% (female)
Post 71% 29% (male)
0.013 86% 14% (female)

In the post-test, a significantly higher percentage of females than males agreed with the statement.

10. Sometimes I am afraid of getting badly scarred.
Pre 55% 45% (male)
0.010 73% 27% (female)
Post 63% 37% (male) 0.088 74% 26% (female)

In the pre-test, significantly more females than males agreed with the statement. Post-test answers of males changed so that the difference was no longer significant.

12. I would date a blind person as readily as I would date anyone else.
Pre 55% 45% (know someone)
0.617 59% 41% (not know)
Post 66% 34% (know someone)
0.012 44% 56% (not know)

Post-test answers of both groups changed so that in the post test significantly more students knowing someone with a disability agreed with the statement.

Males only: Pre 49% 51% (know someone)
0.254 65% 35% (not know)
Post 70% 30% (know someone)
0.041 45% 55% (not know)

Looking at answers of males only, the change in post-test answers changed dramatically so that significantly more male students knowing someone with a disability agreed with the statement.


In the pretest, significantly more females than males agreed with statement 10, "Sometimes I am afraid of getting badly scarred." (df=1,X =6.639, p<0.010). In the posttest, more males agreed with the item, so the the difference was not significant.(X =2.906, p<0.088, figure 2).

Regarding knowledge, there was a change in the pre- and post-test answers so that in the posttest a higher percentage of students who knew someone with a disability disagreed with statement 1, "I feel uneasy when I'm near someone missing an arm or a leg." (df1, pre-X =2.594, p<0.107; post-X =5.945, p<0.015).

Item 3, "People with severe mental retardation ought to be kept apart from the normal community" elicited a positive response (disagree) from a large majority of all students. However, in both pre- and post-tests the difference in number of students knowing someone with a disability as opposed to not knowing someone reached statistical significance (df1, pre-X = 4.107, p<0.043; post-X =10.909, p<0,001). Although a significant level of variation between males and females was not reached, there may be a trend for a higher percentage of male than females to agree with the statement (post-X =3.465, p<0.063).

Interesting findings were noted for item 12, "I would date a blind person as readily as I would date anyone else". These figures showed changes within categories , resulting in a reversal in pre- and post-test findings (df1, Pre-X =0.250, p< 0.617; post-X = 6.356, p<0.012). In the pretest, slightly more students who did not know someone with a disability (59%) than those that knew someone (55%) agreed with the statement. After the presentation 44% of the "not know" group agreed with the statement, and 66% of the "knowing " group agreed. This change was more pronounced when we looked at males' answers. 65% of males who did not know someone with a disability agreed with the item (positive response) in the pretest sample. After the presentation, 45% of them agreed. In the pretest, 45% of the males knowing someone with a disability agreed with item 12; this changed to 70% agreement in the posttest.

The results of the study suggest that in general these young people have positive attitudes about people with disabilities. This may be attributed in part to increasing contact between these groups as a consequence of de-institutionalization and the increasing mainstreaming of physically challenged and mentally impaired citizens in school and other aspects of community life (6, 7).

Siller's original work showed that females, college students, and those who had frequent contact with individuals with disabilities scored higher on his DFS-G than males, high school students, and those with little or no interaction. (1). The data presented here support the position that knowing someone who has a disability is a significant factor in positive attitudes, in agreement with Siller and many others (8). One can infer from the response to the statement about keeping the mentally retarded apart from others that perhaps discomfort with the unknown is a factor. It is important that the majority of even the "not know" students responded positively to this item.

Across all data this study did not find significant differences between male and female attitudes. Studies in the past have shown either no difference or more positive attitudes in females.(1, 3). Recent studies have found no difference in most cases (9). The results of individual items in this survey suggest slight differences between male and female attitudes, specifically concerning scarring and adopting a disabled child. The finding of similar scores for both sexes may indicate a trend in recent and future studies, and may reflect an absolute increase in scores for males or a decrease in female scores. Attitudes of people generally have been found to be more favourable to individuals with disabilities, so that it may be speculated that male attitudes have increased to a larger extent than those of females, possibly reflecting a greater societal acceptance for men to express their feelings.

The agreement of particular demographic findings presented here with those of previous studies support the construct validity of the modifications of Siller's scale. The establishment of test-retest reliability is established in part by the lack of variation in pretest and posttest scores. The use of public school students in different suburban areas increased the heterogeneity of the group concerning socioeconomic status, IQ and academic level, and race (African-American, Caucasian, a small percentage of Asian). These findings may be generalizable to high school students in the suburban Richmond vicinity. This adapted scale could be used with other age groups for comparison with high school students.

Limitations

Although self-report questionnaires usually ensure anonymity, people often feel compelled give the "politically correct" answer (10). It was hoped that the use of three categories each of "agree" and "disagree" would negate this effect to some extent. Questionnaires were counted if no more than 2 questions were left unanswered. If 1 or 2 questions were not marked a ratio was used to compute the total score. This occurred in 5 samples. Four students failed to mark the gender category. These questionnaires were entered into the computer, and were used in gender-indifferent computations only.

Seven of the eleven items were negatively worded, and this may have caused a bias in answers, although there was good variability within and among student responses for all questions. Bias may have also been introduced because the researcher was also the presenter, and it is difficult to make a presentation that does not reflect some of the feelings of the presenter.

Attrition may have biased the posttest results, especially among the males, since there was a greater difference in pre- and post-test numbers; Females: pretest n=116; posttest n=113 (2.6%) Males: pretest n=86; posttest =76 (11.6%).

The number of students absent from school on the pretest day or the posttest day is not known. Seven unfinished and unusable questionnaires were handed in after the posttest. Possible reasons for this include discomfort arising from the presentation, inadequate time given by the presenter for completion of the survey, or negative feelings associated with the repetition of the questionnaire. The differences found between males and females in items 2,9,10 and 12 may have been biased in either a positive or negative direction. However, significant variations were not seen in any of the other questions using these same pre- and post-test figures (data not shown).

Definitions of terms used were left to the interpretation of each student and are subject to ambiguity. There could have been wide variation in individual concepts of "physical and mental disabilities". The word "capable" can be widely interpreted also, and perhaps has different meanings for males and females, which may explain the differences seen in item 9. Depending on the meaning of "capable", the question could be construed as attributing unrealistic ability to people with disabilities, or positive rejection (6). It became apparent during the presentation that a few of the students were unsure of the meaning of "epilepsy". For younger students a definition of the term would be necessary. Use of the survey with adults may elicit lower scores on item 2,"I would not adopt a child who is paralysed." For young people this is still a theoretical concept; an adult might consider such a situation more realistically.

Discussion

Previous studies have shown little significant change in attitude from a single intervention, accompanied by the suggestion of the use of multidimensional programs to institute change (7). Pretest and posttest scores were virtually identical in this study, with minor shifts on individual questions, often in a negative direction. The slight negative shifts in some of the answers was an unexpected finding. It had been hypothesized that positive pictures of persons with disabilities, some quite severe, would evoke positive feelings.

Between males and females, the greatest variation was found regarding items of personal consequence (scarring, adopting a paralysed child). Between knowing and not knowing someone with a disability, uncomfortable feelings were found through all degrees of closeness (dating, uneasy near someone, severe mentally retarded kept apart).

One aspect to consider about the differences is that the presentation- pictures aside- might have made thoughts about disability more "real" to the students. The pretest context was variable among the students, although few would have been thinking about disabling and disfiguring conditions beforehand.

The possibility remains that the pictures, some of which were rather dramatic, had a negative impact on some of the students. Interestingly, this possibility was supported during a formal presentation of this data to faculty and students in the Department of Human Genetics. At least one faculty member expressed negative feelings. Perhaps observers feel more comfortable with clinical pictures during a medical presentation. One can more easily feel detached from the people on the screen if they are not seen in any other context. This may be necessary and proper for medical teaching.

The reactions of the students to these slides during the presentation were not overtly negative (as perceived by the presenter), as the reactions had sometimes been during other programs. Comments and questions were encouraged during the slide show, and the general feeling was curiosity and interest. This does not preclude the possibility that some observers were offended.

The issue is emotionally charged, as it is of direct concern to the people we are representing- those with a disabling or disfiguring condition. Individual responses to people with visible impairments are complex, being stimulated by primitive emotions as well as cultural and cognitive backgrounds. The way in which these people are portrayed by medical professionals can have a great impact on the general public. This is an area that warrants future discussion and research.

One of the most important additions to consider in a presentation about people with disabilities, or about medical issues in general, is discussion. Emotions are undoubtedly aroused, and time should be allotted for venting of feelings, both positive and negative. Most of us have mixed feelings about people with disabilities. When we recognize the duality of emotions that exist we can better shape our attitudes and behaviours toward others.

Conclusion

The adapted DSF-G used in this study is not a sensitive instrument for studying the effects of pictures used or of topics covered in a presentation about genetics. Differences were found in pre- and post-test data, but the weaknesses inherent to self-report scales in general (10), and those specific to the study which were discussed previously can obscure true feelings. A focused instrument using direct open-ended questions, although also fraught with weaknesses (10), may provide a better vehicle for eliciting feelings. Future studies should include sampling populations of school children, teachers, medical students, medical professional and people with disabilities. One of the most important additions to consider in a presentation about people with disabilities is discussion. Emotions were undoubtedly aroused, and there should be a time allotted for venting of feelings, both positive and negative.

The slight negative shifts in some of the answers was an unexpected finding. It had been hoped that positive pictures of persons with even severe disabilities would evoke positive feelings. Individual responses to people with visible impairments are complex, being stimulated by primitive emotions as well as cultural and cognitive backgrounds. Between males and females, the greatest variation was found regarding items of personal consequence (scarring, adopting paralysed child).

Between knowing and not knowing someone with a disability, uncomfortable feelings were found through all degrees of closeness (uneasy near someone, severe mentally retarded kept apart, dating). An aspect to consider about the differences is that the presentation - pictures aside - might have made thoughts about disability more "real" to the students. The pretest context was variable among the students, but few would have been thinking about disabling and disfiguring conditions beforehand.

There is the possibility also that we feel more comfortable with clinical pictures during a medical presentation. We can more easily feel detached from the person on the screen if we do not see them in any other context. Challenging students to address their attitudes may influence their current and potentially adult behaviours regarding disabilities.


References

1. Antonak, R. & Livneh, H. The Measurement of Attitudes toward People with Disabilities: Methods, Psychometrics and Scales (Springfield, Ill.: C.C. Thomas, 1988).
2. Weisel, A. et al. (1988) "The structure of attitudes towards persons with disabilities: An Israelli validation of Siller's disability factor scales-general (DSF-G)", Rehabilitation Psychology 33: 227-38.
3. Weisel, A. & Florian, V. (1990) "Same- and cross-gender attitudes toward persons with physical disabilities", Rehabilitation Psychology 35: 229-37.
4. Krementz, J. How it Feels to Live with a Physical Disability (New York: Simon & Schuster, 1992).
5. Krementz, J. How it Feels to Fight for your Life (New York: Simon & Schuster, 1989).
6. Buscaglia, L. The Disabled and Their Parents. A Counseling Challenge (Thorfare, N.J.: C. Slack, 1975).
7. Florian, V. & Kehat, D. (1987) "Changing high school student's attitudes toward disabled people", Health & Social Work 57-63.
8. Abrams, D. et al. (1990) "Social identity and the handicapping functions of stereotypes: Children's understanding of mental and physical handicap", Human Relations 43: 1085-98.
9. Fichten, C. et al., (1991) "Casual interaction between students with various disabilities and their non-disabled peers: The internal dialogue", Rehabilitation Psychology 36: 3-21; Fichten, C. et al., (1991) "Reactions toward dating peers with visual impairments", Rehabilitation Psychology 36: 163-78.
10. Polit, D. & Hungler, B. Nursing Research (Philadelphia: Lippincott, 1991).

Photos used in the classes were taken from Squyres, W.D. (ed.) Patient Education: An Inquiry into the State of the Art (New York: Schocker Books, 1980).


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