J Genet Counsel DOI 10.1007/s10897-014-9777-5
ORIGINAL RESEARCH
Perceptions and Attitudes About Genetic Counseling Among Residents of a Midwestern Rural Area Rachel J. Riesgraf & Patricia McCarthy Veach & Ian M. MacFarlane & Bonnie S. LeRoy
Received: 3 July 2014 / Accepted: 16 September 2014 # National Society of Genetic Counselors, Inc. 2014
Abstract Relatively few investigations of the public’s perceptions and attitudes about genetic counseling exist, and most are limited to individuals at-risk for a specific disease. In this study 203 individuals from a Midwest rural area completed an anonymous survey assessing their familiarity with genetic counseling; perceptions of genetic counseling purpose, scope, and practice; attitudes toward genetic counseling/counselors; and willingness to use genetic counseling services. Although very few respondents were familiar with genetic counseling, most reported accurate perceptions and positive attitudes; mean ratings, however, showed less endorsement of trust in information provided by genetic counselors and less agreement that genetic counseling aligns with their values. Logistic regression indicated reported willingness to use genetic counseling services increased if respondents: had completed some college; rated their familiarity with genetic counseling as high; agreed with the statements: genetic counseling may be useful to someone with cancer in their family, genetic counseling is in line with my values, and genetic counselors advise women to get abortions when there is a problem; and disagreed with the statements: genetic counseling is only useful to a small group of people
R. J. Riesgraf HealthEast Care System, Maplewood, MN, USA P. M. Veach (*) Department of Educational Psychology, University of Minnesota, 250 Education Sciences Building, 56 E. River Road, Minneapolis, MN 55455, USA e-mail: [email protected] I. M. MacFarlane Department of Psychology, Austin College, Sherman, TX, USA B. S. LeRoy Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, MN, USA
with rare diseases, and genetic counselors must receive a lot of special training. Additional findings, practice implications, and research recommendations are presented. Keywords Rural population . Genetic counseling . Familiarity . Perceptions . Attitudes . Willingness to use genetic counseling services Since its inception, the genetic counseling profession has evolved rapidly in scope of practice and patient populations served (Resta 2006). The profession is expected to become even more central to patient care as understanding of the genetic contributions to common diseases (e.g., cancer, cardiovascular disease, diabetes, and dementia) increases (Concannon et al. 2009; Frazer et al. 2009; Ioannidis et al. 2010; Watkins and Farrall 2006), the medical field emphasizes personalized medicine and pharmacogenomics (Daly 2010), and new technologies such as next-generation sequencing make increasing amounts of genetic information available to the general public (Ansorge 2009). Therefore it is important for the public at large to be aware of and accurately perceive genetic counseling services. Prior research has shown significant associations between attitudes and an intention to act, including studies based on the Integrative Model of Behavior Prediction (Fishbein and Yzer 2003), which proposes factors such as attitudes about perceived costs/benefits underlie health beliefs and intention to perform health-related behaviors. For instance, the model has been shown to predict a wide variety of health behaviors including cancer screening (Sheeran and Orbell 2000) and genetic testing (Cyr et al. 2010). Investigations of the effects of attitudes on the actual uptake of genetic counseling services are limited, however. Therefore, the present study investigated familiarity, perceptions, and attitudes regarding genetic counseling among residents of a select rural area in the
Riesgraf et al.
Midwest and assessed the relationship of these variables to willingness to use genetic counseling services.
Individuals’ Perceptions and Attitudes To date, one study (Maio et al. 2013) has examined the general public’s perceptions of genetic counseling. Maio et al. (2013) surveyed Canadians and found less than one-third had ever heard of genetic counseling and a substantial percentage held inaccurate perceptions about its purposes. For instance, a number of respondents endorsed statements that genetic counseling attempts to prevent hereditary conditions (75 %) and advises people about whether to have children (46 %). Other studies focusing on perceptions and attitudes about genetic counseling and genetic counseling services are limited to individuals at-risk for a specific disease, rather than the general public. Results of these studies are helpful, nonetheless, in identifying possible supports and barriers to genetic counseling services which may apply to the broader population. Higher education level predicted interest in genetic counseling services (Glanz et al. 1999) in a sample of people at risk for colorectal cancer and participation in free genetic counseling offered to women at increased risk for breast cancer (Culver et al. 2001). Glanz et al. (1999) also found younger patients were more interested in services. Psychosocial barriers to participation in BRCA genetic counseling included anticipation of negative emotional reactions (e.g., feelings of fear, despair, and hopelessness related to the possibility of having a genetic mutation) and concern about stigmatization related to testing (Thompson et al. 2002) as well as lack of awareness/knowledge about the benefits of genetic counseling, worry and distress related to learning the cancer status of family members, concerns about cost/health insurance, incompatibility with their religious beliefs, and a misperception that genetic testing would be required (Sussner et al. 2010). Sheppard et al. (2013) found African American women at-risk for hereditary cancer had limited knowledge about both genetic counseling and testing, which constituted barriers to participate in genetic counseling services.
Perceptions and Attitudes About Genetic Testing While studies investigating perceptions and attitudes regarding genetic counseling are rare, a larger body of research investigates attitudes about or intentions to undergo genetic testing/screening. Such research may offer some insight as to how others perceive genetic counseling as these are related services, and in our anecdotal experience, often not easily distinguished by those outside the profession. A majority of these studies involve persons at-risk for a specific disease
(e.g., Klitzman 2010; Meiser et al. 2008; Scuffham et al. 2014; Thomas et al. 2007). Population-based studies examining attitudes toward genetic testing/screening are less numerous. Extant population-based studies focus mainly on interest in and uptake of genetic testing in connection with cancer. A statewide telephone survey of interest in genetic testing for cancer risk among residents of Kentucky found respondents expressed a high level of interest in learning about their personal genetic predisposition for cancer in general (87 %) and breast cancer in particular (93 %), while lack of interest was associated with less performance of other healthprotective behaviors (e.g., mammography; Andrykowski et al. 1996). A random telephone survey of Washington residents found intent to be tested for breast or prostate cancer was related to a strong belief in the benefits of genetic testing, perceiving oneself at greater risk for having a gene mutation, and less expressed worry about discrimination (Ulrich et al. 1998). A survey of women in Germany found interest in genetic testing for breast cancer risk was predicted by positive overall attitude, expectation of beneficial outcomes of testing, and fewer fears regarding negative outcomes (Reitz et al. 2004). A few population-based studies assess general opinions of genetic testing rather than disease-specific tests. The results indicate an overall favorable attitude toward genetic testing (Human Genetics Commission 2001; Shaw and Bassi 2001; Singer et al. 1999) although there are some areas of concern. For example, samples of Finnish residents have found sizeable percentages of respondents believed genetic testing would make abortions more common (47 %), feared test results may lead to discrimination in employment or insurance policies (60 %), believed the “natural order” should be respected without interference (35 %), reported distrust regarding disclosure or use of personal genetic information by outside parties (28 %; Heitala et al. 1995), and feared testing may lead to eugenics (50 %; Toiviainen et al. 2003). A study of German residents found younger respondents were more open-minded toward genetic testing, and those with high educational achievement were more approving than those with a lower level of education (Balck et al. 2009), which mirror predictors of interest in genetic counseling in those atrisk for colorectal cancer (Glanz et al. 1999). Public concerns have been noted regarding genetics and genetic information in general. Over 50 % of a Dutch consumer panel reported lack of genetic knowledge, and ~20 % anticipated negative consequences of genetic developments for society (Henneman et al. 2008). A study in the UK found a high level of support for some uses of genetic information, including to: improve the diagnosis of diseases, better understand who is at higher risk of common diseases, and develop treatments for genetic disorders (Human Genetics Commission 2001). Studies in the UK have also found,
Perceptions and Attitudes About Genetic Counseling
however, concerns about how genetic information would be protected from inappropriate use (e.g., by insurance companies and employers; parents choosing their child’s gender or physical characteristics; Human Genetics Commission 2001), lack of trust, knowledge deficits, and misunderstandings about medical genetics (Barnett et al. 2007; Sturgis et al. 2005).
breast cancer itself, including more pessimistic views about prognosis and the effectiveness of screening. They also were significantly less likely to participate in recommended breast screening practices.
Purpose of the Present Study Rural Populations’ Attitudes and Perceptions About Genetic Testing and Genetic Counseling The U.S. Census Bureau defines any area with a population of less than 2,500 as rural (U.S. Census Bureau 2013). In 2010, nearly 59.5 million residents (19.3 % of the U.S. population) were classified as rural by the Census Bureau taxonomy (U.S. Census Bureau 2013). In addition to small population size, several sociodemographic characteristics are common to rural areas. Rural populations, on average, have relatively more elderly people and children, fewer ethnic minorities, higher poverty and unemployment rates, and higher percentages of uninsured and underinsured residents compared to non-rural areas (Wagenfeld 2003). In addition, personal values of stoicism, self-reliance, conservatism, and a reluctance to seek help have been shown to be more prominent among rural residents (Judd et al. 2006). Access to healthcare comprises another significant difference between rural residents and their urban counterparts. Healthcare facilities in rural communities typically have a limited scope of practice and, as a result, rural residents have less local access to specialist healthcare providers (Hart et al. 2005). For example, in 2008, only 25 % of clinical genetic counselors worked in rural settings, with only 1 % working solely in rural areas (Smith et al. 2009). Rural residents therefore are faced with additional obstacles of longer travel distances to, and higher costs associated with, necessary healthcare services (Wagenfeld 2003). Several studies of health-related attitudes and behaviors have targeted the general rural public (Fuller et al. 2000; Komiti et al. 2006), but to our knowledge, ours is the first study to evaluate perceptions and attitudes of genetic counseling among a rural population in the United States. A few studies have assessed feelings about genetic testing or protective health behaviors among a rural population. For example, a survey of rural Montanans’ hypothetical likelihood to pursue genetic testing for colorectal cancer found perceived benefits to be the best predictors, while perceived barriers of cost and consequences for insurance coverage were negative predictors (Cyr et al. 2010). In a comparative study of women’s knowledge, attitudes, and behaviors in regards to breast cancer screening, rural women had the same basic knowledge of breast cancer and perceptions of barriers to mammography as urban women (Bryant and Mah 1992). Rural women, however, had more negative attitudes about
This is the first population-based study to specifically investigate familiarity, perceptions, and attitudes regarding genetic counseling among the general public residing in a Midwestern rural area. Four major research questions assessing the influence of self-reported familiarity with genetic counseling and perceptions and attitudes about genetic counseling and willingness to use genetic counseling services were investigated: (1) How familiar are rural residents with genetic counseling? (2) How accurate are rural residents’ perceptions of the purpose, scope, and practice of genetic counseling? (3) What are rural residents’ attitudes about genetic counseling? and (4) Would rural residents be willing to use genetic counseling services?
Methods Participants and Procedures Upon approval from the University of Minnesota Institutional Review Board, the first author attended three youth baseball tournaments and three youth softball tournaments in a Midwestern rural area in July, 2010 to recruit participants. This location was targeted because at the time of the study it had a population of 874 and was classified as a rural community, according to the 2000 U.S. Census. Seventeen communities had teams competing in the tournaments. Their population size ranged from 441 to 16,136 (median=2,762; 2000 US Census). A majority of these communities are located within 55 miles of the targeted location. The nearest hospital is located approximately 12 miles from the area where data were collected. This hospital primarily provides basic medical care; more advanced care requires additional travel to a hospital in a major city. Distances to the nearest genetic counseling services available to individuals residing in this area and the surrounding communities range from 54 to 76 miles. The first author and a male research assistant approached and invited tournament attendees to participate in a study designed to understand how much information individuals residing in rural communities have regarding genetic counseling services and their attitudes toward those services. Only individuals over 18 years old were eligible to participate. The survey did not contain any identifying information, and potential participants were assured collected data would be anonymous.
Riesgraf et al.
A total of 270 individuals were approached over 6 days. Of these, 29 individuals declined to participate. Two-hundred forty-one surveys were completed and returned for an 89 % response rate. Thirty-eight surveys were excluded from analysis because respondents indicated a current residence with a population > 2,500. Therefore, the final study sample consisted of 203 adult rural residents. Instrumentation: Survey The authors developed a paper-based survey designed to investigate level of familiarity, perceptions, and attitudes individuals residing in rural communities have regarding genetic counseling as well as their hypothetical willingness to use genetic counseling services. Survey content was informed by a review of extant literature on knowledge and attitudes about genetic testing and genetic counseling among the general public and/or at-risk populations. A draft of the survey was piloted with five genetic counseling students and four members of a rural community, resulting in minor wording revisions. The survey consisted of four sections. Section A contained seven demographic questions. Section B contained three questions asking whether respondents had heard the term genetic counseling prior to this survey; if so, how they heard about it; and how familiar they were with genetic counseling (1=little/ no familiarity, 2=somewhat familiar, 3=familiar, 4=very familiar). Section C of the survey included a brief explanation of genetic counseling adapted from a description provided by the National Society of Genetic Counselors (2009) website under “Genetic Counseling as a Profession”: Genetic counseling is the process of providing information and support to families who may be at risk for a variety of genetic or inherited conditions. Genetic counselors identify families at risk, investigate the problem present in the family, interpret information about the condition, analyze inheritance patterns and risks of recurrence, and review available options with the family. Fifteen statements pertaining to the purpose, scope, and/or practice of genetic counseling or genetic counselors followed this description. Respondents indicated their agreement or disagreement with each statement (1=disagree, 2=somewhat disagree, 3=somewhat agree, 4=agree). Thirteen of these statements targeted general perceptions of genetic counseling and reflected either accurate or inaccurate perceptions. Two statements targeted respondents’ attitudes about participating in genetic counseling. Each statement was evaluated for reading level using the Flesch Kincaid Grade Level Scale (see Table 1). Twelve statements ranged in grade level from 6.7 to 11. Two statements had grade levels of 18.4 and 16.2, respectively, but were
Table 1 Flesch Kincaid grade level and accuracy of survey statements assessing perceptions and attitudes about genetic counseling Survey statement The goal of genetic counseling is to keep genetic problems out of society. Genetic counseling is a service mainly for pregnant women. Genetic counseling is confidential. Genetic counselors advise women to get abortions when there is a problem. Genetic counselors give people emotional support. Genetic counseling is only useful to a small group of people with rare diseases. Genetic counseling can help cure a genetic problem. Genetic counseling helps expecting parents choose the gender of their child. Genetic counselors must receive a lot of special training to do their job. Genetic counselors require people to have genetic tests. Genetic counseling helps expecting parents choose the eye color of their child. Genetic counseling may be helpful for someone with cancer in their family. Seeing a genetic counselor could cause someone to lose their insurance or job. I would trust the information provided by a genetic counselor.* Genetic counseling is in line with my values.*
Grade level Accuracy 9.4
Inaccurate
10.2
Inaccurate
18.4 9.7
Accurate Inaccurate
16.2
Accurate
10.0
Inaccurate
9.6
Inaccurate
9.0
Inaccurate
7.6
Accurate
11.1
Inaccurate
8.7
Inaccurate
8.7
Accurate
9.4
Inaccurate
10.7
Attitude
6.7
Attitude
Note. Accuracy assessed independently by seven genetic counselors; *assesses an attitude rather than a general perception of genetic counseling and thus cannot be universally accurate or inaccurate
retained because they assess important perceptions, and revision would not preserve their meaning. The accuracy or inaccuracy of the statements was validated independently by seven certified genetic counselors currently practicing in the field. They unanimously agreed nine statements were misconceptions (i.e., does not accurately represent the purpose, scope, or practice of genetic counseling/genetic counselors), four were accurate, and the final two statements reflected personal attitudes. Section D asked respondents to indicate if there were circumstances in which they would use genetic counseling services (yes/no) and to explain their answer in an open-ended item.
Data Analyses Logistic regression analysis was conducted to determine which variables were significant predictors of willingness to use genetic counseling services. Responses to the open-ended item asking respondents to explain why they would or would not use genetic counseling services, were analyzed using
Perceptions and Attitudes About Genetic Counseling
interpretive content analysis methods (as described in Giarelli and Tulman 2003) to categorize conceptually similar responses. The first author reviewed the content of each written response and grouped them into themes. Then she created a title for each grouping to represent the major conceptual theme and in some cases more specific categories within themes. The second author served as data auditor, and disagreements regarding response classifications were resolved by discussion to reach consensus.
Results
problems out of society (M=2.29, SD=1.05). Both attitude statements had mean scores indicating positive opinions, with trust of information provided by a genetic counselor (M=3.19, SD=0.66) being higher than seeing genetic counseling as in line with their values (M=2.88, SD=0.82). Willingness to Use Genetic Counseling Services Responses to the question regarding willingness to use genetic counseling services were almost evenly split. Of the sample, 54.7 % (n=105) indicated there were circumstances in which they would use genetic counseling services, and 45.3 % (n= 87) indicated there were no circumstances in which they would use genetic counseling services.
Sample Demographics Inclusion Criteria for Statistical Analyses Table 2 contains a summary of respondent demographics. About two-thirds were female (66.7 %), and a vast majority (99 %) identified themselves as Caucasian. They ranged in age from 18 to 94 years (M=41.4; SD=13.98). At the time of the survey, most respondents had either completed a bachelor’s degree (26.6 %), some college (25 %), or their high school diploma or GED (24 %), and most (82.3 %) had children. Respondent Self-Reported Familiarity with Genetic Counseling Table 2 contains a summary of responses to items concerning familiarity with genetic counseling. There was an almost even split between respondents who had heard the term “genetic counseling” (47.4 %) and those who had not (46.4 %). For those having heard the term previously, the most common source was media (48.4 %). The average selfreported familiarity with genetic counseling was quite low (M=1.44, SD=0.66). Perceptions and Attitudes About Genetic Counseling Table 3 presents descriptive statistics for respondents’ agreement with statements about genetic counseling. Means ranged from a low of 1.41 (SD=0.79) for Genetic counseling helps expecting parents choose the eye color of their child, to 3.64 (SD=0.69) for Genetic counseling is confidential. Mean ratings for all four of the accurate statements about the purpose, scope, and practice of genetic counseling were > 3.00. Mean ratings for responses to six of the nine inaccurate statements about the purpose, scope, and practice of genetic counseling were < 2.00. Respondents were approximately split in their agreement with the statements Genetic counselors require people to have genetic tests (M=2.57, SD=1.05), Genetic counseling can help cure a genetic problem (M=2.37, SD= 1.07), and The goal of genetic counseling is to keep genetic
One hundred ninety-two respondents (~92 % of the overall sample) were included in the analyses because they responded either “yes” or “no” to the outcome variable, and they had no more than 25 % missing data across the survey. Ten individuals were not included because they did not answer the outcome variable, and one individual had missing data for more than 25 % of the survey questions. Therefore, the n for the following results is 192. Based on chi-square and t-tests, the demographics of the sample used in the quantitative data analyses were not significantly different from the total sample (all p≥.05). Multiple Imputation of Missing Data Missing data for participants included in the analyses were estimated using multiple imputation, as supported by Schlomer et al. (2010). Multiple imputation allows for inclusion of more respondents in the logistic regression, thus increasing the power of the analysis. Each missing value for respondents included in the statistical analyses was estimated 10 times using a separate regression, adding a random error term with each round of estimation. This process conserved 19 respondents (~10 % of the dataset) for the statistical data analyses. A total of 26 values were imputed (0.6 % of the total data) for the responses to statements about genetic counseling, with an average of 1.4 imputations per person (range=1–2). Logistic regression analyses were performed separately on each imputed dataset and combined using Rubin’s (1987) rules. Imputation was conducted with the Amelia package (Honaker, King, and Blackwell 2010) for R. Correlations Between Predictors Entered into Logistic Regression Analysis Correlations between possible predictors of willingness to use genetic counseling services are presented in Table 4. The largest negative correlation was −.26 for the statements I
Riesgraf et al. Table 2 Respondent demographics and awareness of genetic counseling (n=192) Variable Gender Male Female Race Caucasian African American Native American Children Yes No Education Less than High School High School/GED Some College Associate’s Degree Bachelor’s Degree Master’s Degree Ph.D. Professional Degree
Number
Percent
64 128
33.3 66.7
190 1 1
99.0 0.5 0.5
158 34
82.3 17.7
1 46 48 25 51 15
0.5 24.0 25.0 13.0 26.6 7.8
1 5
0.5 2.6
Variable Heard the Term GC Yes No Not Sure How Heard of GC Media A Class Family Have Received Services Othera
Number
Percent
91 89 12
47.4 46.4 6.2
44 27 26 15 8
48.4 29.7 28.6 16.5 8.8
Note. a Other: I’m an RN in Maternity dept.; Clients at work; I am a nurse; I work in the healthcare field; I do genetic testing; Just general knowledge; Doctor; Wife a nurse and talked about it at [name of hospital].
would trust the information provided by a genetic counselor and seeing a genetic counselor could cause someone to lose their insurance or job. The largest positive correlation was .52
for the statements genetic counseling helps expecting parents choose the eye color of their child and genetic counseling helps expecting parents choose the gender of their child.
Table 3 Means, standard deviations, and medians for responses to statements about genetic counseling (n=192) Statement
Mb
SD
Mdn
Purpose, scope, and practice of genetic counseling Genetic counseling is confidentiala Genetic counselors must receive a lot of special training to do their joba
3.64 3.59
0.69 0.61
4.00 4.00
3.46 3.25 2.57 2.37 2.29 1.73 1.72 1.59 1.56 1.54 1.41
0.69 0.84 1.05 1.07 1.05 0.86 0.86 0.83 0.83 0.86 0.79
4.00 3.00 3.00 2.00 2.00 1.00 1.23 1.00 1.00 1.00 1.00
3.19 2.88
0.66 0.82
3.00 3.00
Genetic counseling may be useful to someone with cancer in their familya Genetic counselors give people emotional supporta Genetic counselors require people to have genetic tests. Genetic counseling can help cure a genetic problem. The goal of genetic counseling is to keep genetic problems out of society. Genetic counseling is a service mainly for pregnant women. Genetic counseling is only useful to a small group of people with rare diseases. Genetic counselors advise women to get abortions when there is a problem. Seeing a genetic counselor could cause someone to lose their insurance or job. Genetic counseling helps expecting parents choose the gender of their child. Genetic counseling helps expecting parents choose the eye color of their child. Attitudes about genetic counseling I would trust the information provided by a genetic counselor. Genetic counseling is in line with my values.
Note. a Item reflects an accurate perception of genetic counseling; b Scale: 1 = Disagree, 2 = Somewhat Disagree, 3 = Somewhat Agree, 4 = Agree; All items had responses across the entire range of the scale
Perceptions and Attitudes About Genetic Counseling Table 4 Correlations between predictors for logistic regression analysis Variable 1. Would Ever Use GC 2. Gender 3. Age 4. In a Relationship 5. Education
1 1 −.11 .01 .10 .14
2 1 −.09 −.06 −.22
3
4
5
1 .11
1
6
7
8
9
10
11
12
1 .39 −.02
6. Familiarity with GC .21 −.23 .00 .10 .33 1 7. The goal of GC is to keep genetic problems −.05 .21 −.15 −.18 −.10 −.20 1 out of society 8. GC is a service mainly for pregnant women. −.05 .09 −.18 −.14 .03 −.10 .30 1 9. GC is confidential. .00 −.10 −.05 .12 .09 .08 .06 −.01 1 10. GCs advise women to get abortions when .01 .11 .00 −.02 −.07 −.05 .10 .17 −.15 there is a problem. 11. GCs give people emotional support. .06 −.18 .01 .10 −.13 −.07 .08 −.10 .25 12. GC is only useful to a small group of people with −.13 −.04 .05 −.08 .03 .03 .06 .23 −.09 rare diseases. 13. GC can help cure a genetic problem. −.09 .05 −.10 −.15 −.22 −.15 .36 .07 .08 14. GC helps expecting parents choose the gender −.04 .10 −.03 −.08 −.14 −.17 .09 .15 −.09 of their child. 15. GCs must receive a lot of special training to do their .02 −.07 .11 .18 .07 −.07 −.09 −.11 .16 job. 16. GCs require people to have genetic tests. −.01 .05 −.02 −.09 −.19 −.22 .12 .02 −.09 17. GC helps expecting parents choose the eye color −.03 .14 −.03 −.05 −.11 −.10 .12 .21 −.06 of their child. 18. GC may be useful to someone with cancer in their .26 −.06 .17 .14 .01 .06 .01 −.11 .18 family. −.06 −.01 .14 .05 −.04 .05 .06 .11 −.17 19. Seeing a GC could cause someone to lose their insurance or job. 20. I would trust the information provided by a GC .19 −.05 .16 −.01 .11 .08 .04 .01 .33 21. GC is in line with my values. .29 −.03 .13 −.01 .09 .07 −.04 .01 .20 Variable 13 14 15 16 17 18 19 20 21 13. GC can help cure a genetic problem. 1 14. GC helps expecting parents choose .11 1 the gender of their child. 15. GCs must receive a lot of special training .06 −.10 1 to do their job. 16. GCs require people to have genetic tests. .13 .26 .17 1 17. GC helps expecting parents choose .01 .52 −.11 .23 1 the eye color of their child. 18. GC may be useful to someone with cancer .03 −.03 .21 .14 .00 1 in their family. 19. Seeing a GC could cause someone to lose −.04 .18 .01 .11 .24 −.01 1 their insurance or job. 20. I would trust the information provided by a GC .14 −.15 .14 −.03 −.22 .09 −.26 1 21. GC is in line with my values. .06 −.09 .26 .02 −.08 .20 −.19 .43 1
1 −.21 .25
1 −.20
1
−.03 .27
.15 −.16
−.06 .18
−.03
.23
−.20
.06 .36
.09 −.19
.00 .34
−.23
.05
.00
.26
−.07
.17
−.22 −.23 – – –
.15 .14 – – –
−.22 −.15 – – –
–
–
–
– –
– –
– –
–
–
–
–
–
–
– –
– –
– –
Note. Values in italic have p
ORIGINAL RESEARCH
Perceptions and Attitudes About Genetic Counseling Among Residents of a Midwestern Rural Area Rachel J. Riesgraf & Patricia McCarthy Veach & Ian M. MacFarlane & Bonnie S. LeRoy
Received: 3 July 2014 / Accepted: 16 September 2014 # National Society of Genetic Counselors, Inc. 2014
Abstract Relatively few investigations of the public’s perceptions and attitudes about genetic counseling exist, and most are limited to individuals at-risk for a specific disease. In this study 203 individuals from a Midwest rural area completed an anonymous survey assessing their familiarity with genetic counseling; perceptions of genetic counseling purpose, scope, and practice; attitudes toward genetic counseling/counselors; and willingness to use genetic counseling services. Although very few respondents were familiar with genetic counseling, most reported accurate perceptions and positive attitudes; mean ratings, however, showed less endorsement of trust in information provided by genetic counselors and less agreement that genetic counseling aligns with their values. Logistic regression indicated reported willingness to use genetic counseling services increased if respondents: had completed some college; rated their familiarity with genetic counseling as high; agreed with the statements: genetic counseling may be useful to someone with cancer in their family, genetic counseling is in line with my values, and genetic counselors advise women to get abortions when there is a problem; and disagreed with the statements: genetic counseling is only useful to a small group of people
R. J. Riesgraf HealthEast Care System, Maplewood, MN, USA P. M. Veach (*) Department of Educational Psychology, University of Minnesota, 250 Education Sciences Building, 56 E. River Road, Minneapolis, MN 55455, USA e-mail: [email protected] I. M. MacFarlane Department of Psychology, Austin College, Sherman, TX, USA B. S. LeRoy Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, MN, USA
with rare diseases, and genetic counselors must receive a lot of special training. Additional findings, practice implications, and research recommendations are presented. Keywords Rural population . Genetic counseling . Familiarity . Perceptions . Attitudes . Willingness to use genetic counseling services Since its inception, the genetic counseling profession has evolved rapidly in scope of practice and patient populations served (Resta 2006). The profession is expected to become even more central to patient care as understanding of the genetic contributions to common diseases (e.g., cancer, cardiovascular disease, diabetes, and dementia) increases (Concannon et al. 2009; Frazer et al. 2009; Ioannidis et al. 2010; Watkins and Farrall 2006), the medical field emphasizes personalized medicine and pharmacogenomics (Daly 2010), and new technologies such as next-generation sequencing make increasing amounts of genetic information available to the general public (Ansorge 2009). Therefore it is important for the public at large to be aware of and accurately perceive genetic counseling services. Prior research has shown significant associations between attitudes and an intention to act, including studies based on the Integrative Model of Behavior Prediction (Fishbein and Yzer 2003), which proposes factors such as attitudes about perceived costs/benefits underlie health beliefs and intention to perform health-related behaviors. For instance, the model has been shown to predict a wide variety of health behaviors including cancer screening (Sheeran and Orbell 2000) and genetic testing (Cyr et al. 2010). Investigations of the effects of attitudes on the actual uptake of genetic counseling services are limited, however. Therefore, the present study investigated familiarity, perceptions, and attitudes regarding genetic counseling among residents of a select rural area in the
Riesgraf et al.
Midwest and assessed the relationship of these variables to willingness to use genetic counseling services.
Individuals’ Perceptions and Attitudes To date, one study (Maio et al. 2013) has examined the general public’s perceptions of genetic counseling. Maio et al. (2013) surveyed Canadians and found less than one-third had ever heard of genetic counseling and a substantial percentage held inaccurate perceptions about its purposes. For instance, a number of respondents endorsed statements that genetic counseling attempts to prevent hereditary conditions (75 %) and advises people about whether to have children (46 %). Other studies focusing on perceptions and attitudes about genetic counseling and genetic counseling services are limited to individuals at-risk for a specific disease, rather than the general public. Results of these studies are helpful, nonetheless, in identifying possible supports and barriers to genetic counseling services which may apply to the broader population. Higher education level predicted interest in genetic counseling services (Glanz et al. 1999) in a sample of people at risk for colorectal cancer and participation in free genetic counseling offered to women at increased risk for breast cancer (Culver et al. 2001). Glanz et al. (1999) also found younger patients were more interested in services. Psychosocial barriers to participation in BRCA genetic counseling included anticipation of negative emotional reactions (e.g., feelings of fear, despair, and hopelessness related to the possibility of having a genetic mutation) and concern about stigmatization related to testing (Thompson et al. 2002) as well as lack of awareness/knowledge about the benefits of genetic counseling, worry and distress related to learning the cancer status of family members, concerns about cost/health insurance, incompatibility with their religious beliefs, and a misperception that genetic testing would be required (Sussner et al. 2010). Sheppard et al. (2013) found African American women at-risk for hereditary cancer had limited knowledge about both genetic counseling and testing, which constituted barriers to participate in genetic counseling services.
Perceptions and Attitudes About Genetic Testing While studies investigating perceptions and attitudes regarding genetic counseling are rare, a larger body of research investigates attitudes about or intentions to undergo genetic testing/screening. Such research may offer some insight as to how others perceive genetic counseling as these are related services, and in our anecdotal experience, often not easily distinguished by those outside the profession. A majority of these studies involve persons at-risk for a specific disease
(e.g., Klitzman 2010; Meiser et al. 2008; Scuffham et al. 2014; Thomas et al. 2007). Population-based studies examining attitudes toward genetic testing/screening are less numerous. Extant population-based studies focus mainly on interest in and uptake of genetic testing in connection with cancer. A statewide telephone survey of interest in genetic testing for cancer risk among residents of Kentucky found respondents expressed a high level of interest in learning about their personal genetic predisposition for cancer in general (87 %) and breast cancer in particular (93 %), while lack of interest was associated with less performance of other healthprotective behaviors (e.g., mammography; Andrykowski et al. 1996). A random telephone survey of Washington residents found intent to be tested for breast or prostate cancer was related to a strong belief in the benefits of genetic testing, perceiving oneself at greater risk for having a gene mutation, and less expressed worry about discrimination (Ulrich et al. 1998). A survey of women in Germany found interest in genetic testing for breast cancer risk was predicted by positive overall attitude, expectation of beneficial outcomes of testing, and fewer fears regarding negative outcomes (Reitz et al. 2004). A few population-based studies assess general opinions of genetic testing rather than disease-specific tests. The results indicate an overall favorable attitude toward genetic testing (Human Genetics Commission 2001; Shaw and Bassi 2001; Singer et al. 1999) although there are some areas of concern. For example, samples of Finnish residents have found sizeable percentages of respondents believed genetic testing would make abortions more common (47 %), feared test results may lead to discrimination in employment or insurance policies (60 %), believed the “natural order” should be respected without interference (35 %), reported distrust regarding disclosure or use of personal genetic information by outside parties (28 %; Heitala et al. 1995), and feared testing may lead to eugenics (50 %; Toiviainen et al. 2003). A study of German residents found younger respondents were more open-minded toward genetic testing, and those with high educational achievement were more approving than those with a lower level of education (Balck et al. 2009), which mirror predictors of interest in genetic counseling in those atrisk for colorectal cancer (Glanz et al. 1999). Public concerns have been noted regarding genetics and genetic information in general. Over 50 % of a Dutch consumer panel reported lack of genetic knowledge, and ~20 % anticipated negative consequences of genetic developments for society (Henneman et al. 2008). A study in the UK found a high level of support for some uses of genetic information, including to: improve the diagnosis of diseases, better understand who is at higher risk of common diseases, and develop treatments for genetic disorders (Human Genetics Commission 2001). Studies in the UK have also found,
Perceptions and Attitudes About Genetic Counseling
however, concerns about how genetic information would be protected from inappropriate use (e.g., by insurance companies and employers; parents choosing their child’s gender or physical characteristics; Human Genetics Commission 2001), lack of trust, knowledge deficits, and misunderstandings about medical genetics (Barnett et al. 2007; Sturgis et al. 2005).
breast cancer itself, including more pessimistic views about prognosis and the effectiveness of screening. They also were significantly less likely to participate in recommended breast screening practices.
Purpose of the Present Study Rural Populations’ Attitudes and Perceptions About Genetic Testing and Genetic Counseling The U.S. Census Bureau defines any area with a population of less than 2,500 as rural (U.S. Census Bureau 2013). In 2010, nearly 59.5 million residents (19.3 % of the U.S. population) were classified as rural by the Census Bureau taxonomy (U.S. Census Bureau 2013). In addition to small population size, several sociodemographic characteristics are common to rural areas. Rural populations, on average, have relatively more elderly people and children, fewer ethnic minorities, higher poverty and unemployment rates, and higher percentages of uninsured and underinsured residents compared to non-rural areas (Wagenfeld 2003). In addition, personal values of stoicism, self-reliance, conservatism, and a reluctance to seek help have been shown to be more prominent among rural residents (Judd et al. 2006). Access to healthcare comprises another significant difference between rural residents and their urban counterparts. Healthcare facilities in rural communities typically have a limited scope of practice and, as a result, rural residents have less local access to specialist healthcare providers (Hart et al. 2005). For example, in 2008, only 25 % of clinical genetic counselors worked in rural settings, with only 1 % working solely in rural areas (Smith et al. 2009). Rural residents therefore are faced with additional obstacles of longer travel distances to, and higher costs associated with, necessary healthcare services (Wagenfeld 2003). Several studies of health-related attitudes and behaviors have targeted the general rural public (Fuller et al. 2000; Komiti et al. 2006), but to our knowledge, ours is the first study to evaluate perceptions and attitudes of genetic counseling among a rural population in the United States. A few studies have assessed feelings about genetic testing or protective health behaviors among a rural population. For example, a survey of rural Montanans’ hypothetical likelihood to pursue genetic testing for colorectal cancer found perceived benefits to be the best predictors, while perceived barriers of cost and consequences for insurance coverage were negative predictors (Cyr et al. 2010). In a comparative study of women’s knowledge, attitudes, and behaviors in regards to breast cancer screening, rural women had the same basic knowledge of breast cancer and perceptions of barriers to mammography as urban women (Bryant and Mah 1992). Rural women, however, had more negative attitudes about
This is the first population-based study to specifically investigate familiarity, perceptions, and attitudes regarding genetic counseling among the general public residing in a Midwestern rural area. Four major research questions assessing the influence of self-reported familiarity with genetic counseling and perceptions and attitudes about genetic counseling and willingness to use genetic counseling services were investigated: (1) How familiar are rural residents with genetic counseling? (2) How accurate are rural residents’ perceptions of the purpose, scope, and practice of genetic counseling? (3) What are rural residents’ attitudes about genetic counseling? and (4) Would rural residents be willing to use genetic counseling services?
Methods Participants and Procedures Upon approval from the University of Minnesota Institutional Review Board, the first author attended three youth baseball tournaments and three youth softball tournaments in a Midwestern rural area in July, 2010 to recruit participants. This location was targeted because at the time of the study it had a population of 874 and was classified as a rural community, according to the 2000 U.S. Census. Seventeen communities had teams competing in the tournaments. Their population size ranged from 441 to 16,136 (median=2,762; 2000 US Census). A majority of these communities are located within 55 miles of the targeted location. The nearest hospital is located approximately 12 miles from the area where data were collected. This hospital primarily provides basic medical care; more advanced care requires additional travel to a hospital in a major city. Distances to the nearest genetic counseling services available to individuals residing in this area and the surrounding communities range from 54 to 76 miles. The first author and a male research assistant approached and invited tournament attendees to participate in a study designed to understand how much information individuals residing in rural communities have regarding genetic counseling services and their attitudes toward those services. Only individuals over 18 years old were eligible to participate. The survey did not contain any identifying information, and potential participants were assured collected data would be anonymous.
Riesgraf et al.
A total of 270 individuals were approached over 6 days. Of these, 29 individuals declined to participate. Two-hundred forty-one surveys were completed and returned for an 89 % response rate. Thirty-eight surveys were excluded from analysis because respondents indicated a current residence with a population > 2,500. Therefore, the final study sample consisted of 203 adult rural residents. Instrumentation: Survey The authors developed a paper-based survey designed to investigate level of familiarity, perceptions, and attitudes individuals residing in rural communities have regarding genetic counseling as well as their hypothetical willingness to use genetic counseling services. Survey content was informed by a review of extant literature on knowledge and attitudes about genetic testing and genetic counseling among the general public and/or at-risk populations. A draft of the survey was piloted with five genetic counseling students and four members of a rural community, resulting in minor wording revisions. The survey consisted of four sections. Section A contained seven demographic questions. Section B contained three questions asking whether respondents had heard the term genetic counseling prior to this survey; if so, how they heard about it; and how familiar they were with genetic counseling (1=little/ no familiarity, 2=somewhat familiar, 3=familiar, 4=very familiar). Section C of the survey included a brief explanation of genetic counseling adapted from a description provided by the National Society of Genetic Counselors (2009) website under “Genetic Counseling as a Profession”: Genetic counseling is the process of providing information and support to families who may be at risk for a variety of genetic or inherited conditions. Genetic counselors identify families at risk, investigate the problem present in the family, interpret information about the condition, analyze inheritance patterns and risks of recurrence, and review available options with the family. Fifteen statements pertaining to the purpose, scope, and/or practice of genetic counseling or genetic counselors followed this description. Respondents indicated their agreement or disagreement with each statement (1=disagree, 2=somewhat disagree, 3=somewhat agree, 4=agree). Thirteen of these statements targeted general perceptions of genetic counseling and reflected either accurate or inaccurate perceptions. Two statements targeted respondents’ attitudes about participating in genetic counseling. Each statement was evaluated for reading level using the Flesch Kincaid Grade Level Scale (see Table 1). Twelve statements ranged in grade level from 6.7 to 11. Two statements had grade levels of 18.4 and 16.2, respectively, but were
Table 1 Flesch Kincaid grade level and accuracy of survey statements assessing perceptions and attitudes about genetic counseling Survey statement The goal of genetic counseling is to keep genetic problems out of society. Genetic counseling is a service mainly for pregnant women. Genetic counseling is confidential. Genetic counselors advise women to get abortions when there is a problem. Genetic counselors give people emotional support. Genetic counseling is only useful to a small group of people with rare diseases. Genetic counseling can help cure a genetic problem. Genetic counseling helps expecting parents choose the gender of their child. Genetic counselors must receive a lot of special training to do their job. Genetic counselors require people to have genetic tests. Genetic counseling helps expecting parents choose the eye color of their child. Genetic counseling may be helpful for someone with cancer in their family. Seeing a genetic counselor could cause someone to lose their insurance or job. I would trust the information provided by a genetic counselor.* Genetic counseling is in line with my values.*
Grade level Accuracy 9.4
Inaccurate
10.2
Inaccurate
18.4 9.7
Accurate Inaccurate
16.2
Accurate
10.0
Inaccurate
9.6
Inaccurate
9.0
Inaccurate
7.6
Accurate
11.1
Inaccurate
8.7
Inaccurate
8.7
Accurate
9.4
Inaccurate
10.7
Attitude
6.7
Attitude
Note. Accuracy assessed independently by seven genetic counselors; *assesses an attitude rather than a general perception of genetic counseling and thus cannot be universally accurate or inaccurate
retained because they assess important perceptions, and revision would not preserve their meaning. The accuracy or inaccuracy of the statements was validated independently by seven certified genetic counselors currently practicing in the field. They unanimously agreed nine statements were misconceptions (i.e., does not accurately represent the purpose, scope, or practice of genetic counseling/genetic counselors), four were accurate, and the final two statements reflected personal attitudes. Section D asked respondents to indicate if there were circumstances in which they would use genetic counseling services (yes/no) and to explain their answer in an open-ended item.
Data Analyses Logistic regression analysis was conducted to determine which variables were significant predictors of willingness to use genetic counseling services. Responses to the open-ended item asking respondents to explain why they would or would not use genetic counseling services, were analyzed using
Perceptions and Attitudes About Genetic Counseling
interpretive content analysis methods (as described in Giarelli and Tulman 2003) to categorize conceptually similar responses. The first author reviewed the content of each written response and grouped them into themes. Then she created a title for each grouping to represent the major conceptual theme and in some cases more specific categories within themes. The second author served as data auditor, and disagreements regarding response classifications were resolved by discussion to reach consensus.
Results
problems out of society (M=2.29, SD=1.05). Both attitude statements had mean scores indicating positive opinions, with trust of information provided by a genetic counselor (M=3.19, SD=0.66) being higher than seeing genetic counseling as in line with their values (M=2.88, SD=0.82). Willingness to Use Genetic Counseling Services Responses to the question regarding willingness to use genetic counseling services were almost evenly split. Of the sample, 54.7 % (n=105) indicated there were circumstances in which they would use genetic counseling services, and 45.3 % (n= 87) indicated there were no circumstances in which they would use genetic counseling services.
Sample Demographics Inclusion Criteria for Statistical Analyses Table 2 contains a summary of respondent demographics. About two-thirds were female (66.7 %), and a vast majority (99 %) identified themselves as Caucasian. They ranged in age from 18 to 94 years (M=41.4; SD=13.98). At the time of the survey, most respondents had either completed a bachelor’s degree (26.6 %), some college (25 %), or their high school diploma or GED (24 %), and most (82.3 %) had children. Respondent Self-Reported Familiarity with Genetic Counseling Table 2 contains a summary of responses to items concerning familiarity with genetic counseling. There was an almost even split between respondents who had heard the term “genetic counseling” (47.4 %) and those who had not (46.4 %). For those having heard the term previously, the most common source was media (48.4 %). The average selfreported familiarity with genetic counseling was quite low (M=1.44, SD=0.66). Perceptions and Attitudes About Genetic Counseling Table 3 presents descriptive statistics for respondents’ agreement with statements about genetic counseling. Means ranged from a low of 1.41 (SD=0.79) for Genetic counseling helps expecting parents choose the eye color of their child, to 3.64 (SD=0.69) for Genetic counseling is confidential. Mean ratings for all four of the accurate statements about the purpose, scope, and practice of genetic counseling were > 3.00. Mean ratings for responses to six of the nine inaccurate statements about the purpose, scope, and practice of genetic counseling were < 2.00. Respondents were approximately split in their agreement with the statements Genetic counselors require people to have genetic tests (M=2.57, SD=1.05), Genetic counseling can help cure a genetic problem (M=2.37, SD= 1.07), and The goal of genetic counseling is to keep genetic
One hundred ninety-two respondents (~92 % of the overall sample) were included in the analyses because they responded either “yes” or “no” to the outcome variable, and they had no more than 25 % missing data across the survey. Ten individuals were not included because they did not answer the outcome variable, and one individual had missing data for more than 25 % of the survey questions. Therefore, the n for the following results is 192. Based on chi-square and t-tests, the demographics of the sample used in the quantitative data analyses were not significantly different from the total sample (all p≥.05). Multiple Imputation of Missing Data Missing data for participants included in the analyses were estimated using multiple imputation, as supported by Schlomer et al. (2010). Multiple imputation allows for inclusion of more respondents in the logistic regression, thus increasing the power of the analysis. Each missing value for respondents included in the statistical analyses was estimated 10 times using a separate regression, adding a random error term with each round of estimation. This process conserved 19 respondents (~10 % of the dataset) for the statistical data analyses. A total of 26 values were imputed (0.6 % of the total data) for the responses to statements about genetic counseling, with an average of 1.4 imputations per person (range=1–2). Logistic regression analyses were performed separately on each imputed dataset and combined using Rubin’s (1987) rules. Imputation was conducted with the Amelia package (Honaker, King, and Blackwell 2010) for R. Correlations Between Predictors Entered into Logistic Regression Analysis Correlations between possible predictors of willingness to use genetic counseling services are presented in Table 4. The largest negative correlation was −.26 for the statements I
Riesgraf et al. Table 2 Respondent demographics and awareness of genetic counseling (n=192) Variable Gender Male Female Race Caucasian African American Native American Children Yes No Education Less than High School High School/GED Some College Associate’s Degree Bachelor’s Degree Master’s Degree Ph.D. Professional Degree
Number
Percent
64 128
33.3 66.7
190 1 1
99.0 0.5 0.5
158 34
82.3 17.7
1 46 48 25 51 15
0.5 24.0 25.0 13.0 26.6 7.8
1 5
0.5 2.6
Variable Heard the Term GC Yes No Not Sure How Heard of GC Media A Class Family Have Received Services Othera
Number
Percent
91 89 12
47.4 46.4 6.2
44 27 26 15 8
48.4 29.7 28.6 16.5 8.8
Note. a Other: I’m an RN in Maternity dept.; Clients at work; I am a nurse; I work in the healthcare field; I do genetic testing; Just general knowledge; Doctor; Wife a nurse and talked about it at [name of hospital].
would trust the information provided by a genetic counselor and seeing a genetic counselor could cause someone to lose their insurance or job. The largest positive correlation was .52
for the statements genetic counseling helps expecting parents choose the eye color of their child and genetic counseling helps expecting parents choose the gender of their child.
Table 3 Means, standard deviations, and medians for responses to statements about genetic counseling (n=192) Statement
Mb
SD
Mdn
Purpose, scope, and practice of genetic counseling Genetic counseling is confidentiala Genetic counselors must receive a lot of special training to do their joba
3.64 3.59
0.69 0.61
4.00 4.00
3.46 3.25 2.57 2.37 2.29 1.73 1.72 1.59 1.56 1.54 1.41
0.69 0.84 1.05 1.07 1.05 0.86 0.86 0.83 0.83 0.86 0.79
4.00 3.00 3.00 2.00 2.00 1.00 1.23 1.00 1.00 1.00 1.00
3.19 2.88
0.66 0.82
3.00 3.00
Genetic counseling may be useful to someone with cancer in their familya Genetic counselors give people emotional supporta Genetic counselors require people to have genetic tests. Genetic counseling can help cure a genetic problem. The goal of genetic counseling is to keep genetic problems out of society. Genetic counseling is a service mainly for pregnant women. Genetic counseling is only useful to a small group of people with rare diseases. Genetic counselors advise women to get abortions when there is a problem. Seeing a genetic counselor could cause someone to lose their insurance or job. Genetic counseling helps expecting parents choose the gender of their child. Genetic counseling helps expecting parents choose the eye color of their child. Attitudes about genetic counseling I would trust the information provided by a genetic counselor. Genetic counseling is in line with my values.
Note. a Item reflects an accurate perception of genetic counseling; b Scale: 1 = Disagree, 2 = Somewhat Disagree, 3 = Somewhat Agree, 4 = Agree; All items had responses across the entire range of the scale
Perceptions and Attitudes About Genetic Counseling Table 4 Correlations between predictors for logistic regression analysis Variable 1. Would Ever Use GC 2. Gender 3. Age 4. In a Relationship 5. Education
1 1 −.11 .01 .10 .14
2 1 −.09 −.06 −.22
3
4
5
1 .11
1
6
7
8
9
10
11
12
1 .39 −.02
6. Familiarity with GC .21 −.23 .00 .10 .33 1 7. The goal of GC is to keep genetic problems −.05 .21 −.15 −.18 −.10 −.20 1 out of society 8. GC is a service mainly for pregnant women. −.05 .09 −.18 −.14 .03 −.10 .30 1 9. GC is confidential. .00 −.10 −.05 .12 .09 .08 .06 −.01 1 10. GCs advise women to get abortions when .01 .11 .00 −.02 −.07 −.05 .10 .17 −.15 there is a problem. 11. GCs give people emotional support. .06 −.18 .01 .10 −.13 −.07 .08 −.10 .25 12. GC is only useful to a small group of people with −.13 −.04 .05 −.08 .03 .03 .06 .23 −.09 rare diseases. 13. GC can help cure a genetic problem. −.09 .05 −.10 −.15 −.22 −.15 .36 .07 .08 14. GC helps expecting parents choose the gender −.04 .10 −.03 −.08 −.14 −.17 .09 .15 −.09 of their child. 15. GCs must receive a lot of special training to do their .02 −.07 .11 .18 .07 −.07 −.09 −.11 .16 job. 16. GCs require people to have genetic tests. −.01 .05 −.02 −.09 −.19 −.22 .12 .02 −.09 17. GC helps expecting parents choose the eye color −.03 .14 −.03 −.05 −.11 −.10 .12 .21 −.06 of their child. 18. GC may be useful to someone with cancer in their .26 −.06 .17 .14 .01 .06 .01 −.11 .18 family. −.06 −.01 .14 .05 −.04 .05 .06 .11 −.17 19. Seeing a GC could cause someone to lose their insurance or job. 20. I would trust the information provided by a GC .19 −.05 .16 −.01 .11 .08 .04 .01 .33 21. GC is in line with my values. .29 −.03 .13 −.01 .09 .07 −.04 .01 .20 Variable 13 14 15 16 17 18 19 20 21 13. GC can help cure a genetic problem. 1 14. GC helps expecting parents choose .11 1 the gender of their child. 15. GCs must receive a lot of special training .06 −.10 1 to do their job. 16. GCs require people to have genetic tests. .13 .26 .17 1 17. GC helps expecting parents choose .01 .52 −.11 .23 1 the eye color of their child. 18. GC may be useful to someone with cancer .03 −.03 .21 .14 .00 1 in their family. 19. Seeing a GC could cause someone to lose −.04 .18 .01 .11 .24 −.01 1 their insurance or job. 20. I would trust the information provided by a GC .14 −.15 .14 −.03 −.22 .09 −.26 1 21. GC is in line with my values. .06 −.09 .26 .02 −.08 .20 −.19 .43 1
1 −.21 .25
1 −.20
1
−.03 .27
.15 −.16
−.06 .18
−.03
.23
−.20
.06 .36
.09 −.19
.00 .34
−.23
.05
.00
.26
−.07
.17
−.22 −.23 – – –
.15 .14 – – –
−.22 −.15 – – –
–
–
–
– –
– –
– –
–
–
–
–
–
–
– –
– –
– –
Note. Values in italic have p
