Attitudes towards genetic testing: analysis of contradictions

Jallinoja, Piia; Hakonen, Anu; Aro, Arja R.; Niemelä, Pirkko; Hietala, M; Lönnqvist, Jan–Erik; Peltonen, L; Aula, Pertti

doi:10.1016/s0277-9536(98)00017-3

Cited by 64 publications

(57 citation statements)

References 15 publications

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“…It has been shown that public attitudes are sometimes ambiguous, resulting from a coexistence of general support for testing on the one hand, and doubt and opposition for specific aspects of testing on the other hand. 36 A divided response could also mean lack of interest, lack of acquaintance with the subject or confusion about the question. In particular, those with low level of knowledge may have had difficulty to take a stance.…”

Section: Discussionmentioning

confidence: 99%

Public attitudes towards genetic testing revisited: comparing opinions between 2002 and 2010

et al. 2012

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Ten years after the Human Genome Project, medicine is still waiting for many of the promised benefits, and experts have tempered their high expectations. Public opinion on genetic testing has generally been favourable but is this still the case? The aim of this study is to compare public experiences, beliefs and expectations concerning genetic testing over the years (2002 vs 2010). A cross-sectional questionnaire survey was conducted using the Dutch Health Care Consumer Panel in 2002 and 2010. Responses to questions in identical wording were compared. In 2002 and 2010, 817 (63%) and 978 (70%) members responded, respectively. Awareness and reported use of genetic tests remained stable over time. In 2010, more respondents expected genetic testing to become more widely applied, believed that knowledge about the genetic background of disease helps people live longer, and that testing should be promoted more intensively. In 2010, they were also more interested in their own genetic make-up. On the one hand, the concern that a dichotomy would emerge between people with 'good genes' and 'bad genes' was higher. On the other hand, respondents thought that insurance companies would be less likely to demand a genetic test in order to calculate health insurance premiums. In conclusion, the results suggest that in 8 years, expectations of benefits and potential use of genetic testing have been raised among the public, resulting in more positive opinions. Worries on inequity remain, although worries about premium differentiation by insurance companies have decreased.

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Section: Discussionmentioning

confidence: 99%

Public attitudes towards genetic testing revisited: comparing opinions between 2002 and 2010

et al. 2012

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“…2 Major areas of concern range from more global societal issues that genetic research will lead to eugenics, to very personal issues faced by individuals such as the fear of discrimination or of losing health insurance based on genetic test results. [3][4][5] While these concerns have been identified in all groups that have been surveyed, they may have particular relevance for the African American community. 6,7 African Americans have been found to generally hold negative opinions toward the American medical establishment as well as biomedical research.…”

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confidence: 99%

Attitudes of African American premedical students toward genetic testing and screening

Laskey

Williams

Pierre-Louis

et al. 2003

Genetics in Medicine

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Purpose: Genetic research is progressing at a rapid rate. While most view genetic advances favorably, concerns regarding eugenics and discrimination based on genetic test results have been raised. These concerns have been found among all groups studied; however, they have particular relevance for members of the African American community. Studies have shown that because of a long history of negative experiences, African Americans have a general mistrust of the medical establishment. It is unclear whether these negative attitudes encompass genetic advances. Because there is little empiric data in the literature, it is not known whether African Americans have a positive view of genetic advances or whether they have the same level of mistrust as is seen in their attitudes toward other forms of biomedical research. Methods: This study was conducted as an initial effort to examine the attitudes of African Americans toward recent genetic advances and, specifically, genetic testing. A cohort of 97 college-age minority students, including 78 African Americans, participating in the Health Career Enhancement for Minorities Program (HCEM) at Case Western Reserve University were surveyed. Surveys were made available before and after the summer long course, which included five lectures on basic genetic principles and medical genetics. Results: Both African American students and other minority students initially (questionnaire prior to HCEM course) had an overall positive view of genetic testing. The vast majority supported genetic testing for preventive care (95%) and presymptomatic detection of disease (88%) and agreed that it should be easily available (83%). However, several concerns were expressed as well, including fears about discrimination (68%), privacy (68%), that abortions will become more common (51%), and eugenics (37%). It is interesting that in the postcourse questionnaire, the percentages of positive views remained similar to those of the precourse survey, but the number of respondents expressing concerns increased. Discussion: These results suggest that the minority students surveyed view many aspects of genetic testing and other advances favorably. However, these students expressed concerns about discrimination, privacy, and eugenics. These concerns were increased, not lessened, by exposure to genetics education. One possible explanation for this observation is that the students had a greater understanding of the issues regarding genetic testing after the HCEM lectures and discussion. Of note, there was a greater negative response toward genetic screening programs among the African American students compared with the non-African American minority students. This suggests that the negative attitudes of African Americans toward biomedical research do extend to some aspects of genetics and that educational programs must be designed and Key Words: African Americans, attitudes, genetic testingMedicine is in the midst of a genetic revolution, as new disease-related genes are being identified at a rapid rate. These...

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“…Most of the selected studies were essentially descriptive in nature (see table 1). In the research papers, data were collected by self-report, including self-created data collection forms in nine studies [17,18,19,20,21,22,23,24,25] and semi-structured interviews in five studies [26,27,28,29,30] and by studying medical records in six studies [31,32,33,34,35,36]. Furthermore, we included seven literature reviews [37,38,39,40,41,42,43], six case reports [44,45,46,47,48,49] and one study, in which a mathematical model was used [50].…”

Section: Resultsmentioning

confidence: 99%

“…Most papers, however, reported a generally favourable view towards these issues among both lay people and professional health workers [18, 19,21,22,23,24, 26]. …”

Section: Resultsmentioning

confidence: 99%

Genetic Counselling for Familial Conditions during Pregnancy: A Review of the Literature Published during the Years 1989–2004

Aalfs¹,

Smets

Leschot³

2007

Public Health Genomics

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Background: Genetic counselling for familial conditions during pregnancy may have some disadvantages, such as time pressure and induced worry. However, little is known about the reasons for and consequences of this timing of genetic counselling. Objective: The objective of this study was to provide an overview of research aimed at the counselee’s reasons for seeking genetic counselling during pregnancy and the medical-technical and procedural consequences thereof. Methods: We searched the databases Medline and PsycINFO for primary research papers, reviews and case reports, published from 1989 to June 2004. Results: No papers could be retrieved which explicitly addressed our research questions. However, 34 papers, out of a total of 399 papers, covered issues with some relevance to our research questions. Limited knowledge and alertness towards genetics and a greater apparent relevance of genetic issues during pregnancy seemed to explain, at least partly, the timing of referral during pregnancy. Literature on the consequences of this timing for the quality of the genetic counselling process appeared to be scarce. These consequences, therefore, remain unclear. Conclusion: In the literature, little attention is paid to the various aspects of the timing of genetic counselling for familial conditions during pregnancy. More research on this issue is important, with a view to improving the care of pregnant women and their children.

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Attitudes towards genetic testing: analysis of contradictions

Cited by 64 publications

References 15 publications

Public attitudes towards genetic testing revisited: comparing opinions between 2002 and 2010

Public attitudes towards genetic testing revisited: comparing opinions between 2002 and 2010

Attitudes of African American premedical students toward genetic testing and screening

Genetic Counselling for Familial Conditions during Pregnancy: A Review of the Literature Published during the Years 1989–2004

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