Pitfalls of Genetic Testing

Hubbard, R. Glenn; Lewontin, Richard C

doi:10.1056/nejm199605023341812

Cited by 88 publications

(31 citation statements)

References 9 publications

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“…For example, even for ‘simple’ Mendelian disorders, the physiological pathway from genotype to phenotype is usually unknown. Predicting the clinical importance of a positive gene test may be problematic [2]. The tests themselves may not provide the type of information people expect, and even when the results are relatively straightforward, there is often only limited ability to intervene in the natural history of a serious disease [3].…”

Section: Introductionmentioning

confidence: 99%

Attitude and Knowledge about Genetics and Genetic Testing

Etchegary

Cappelli

Potter

et al. 2009

Public Health Genomics

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Background: Increasing numbers of health care users may be confronted with new genetic knowledge and discoveries that offer new types of medical decision-making. How people use these new insights and make decisions about genetic risk depends, at least in part, on their knowledge and attitudes about human genetics. Methods: A postal survey administered to 560 women who had been offered prenatal screening in Ontario measured knowledge about, and attitudes toward, genetic testing and the uses of genetic information. Results: Respondents strongly supported the use of genetic information to improve disease diagnosis and to help understand disease causes; however, people also held a more critical attitude towards certain aspects of testing and genetic information. Relatively high levels of knowledge about genetics were also observed in this sample, although there were deficits in specific areas (e.g., transmission patterns). Conclusions: Despite overall positive attitudes towards genetics, participants held more critical attitudes towards certain aspects of testing and the uses of genetic information. It would be unwise for genetics policy-makers and stakeholders to assume that a better-informed public would automatically be more supportive of all genetics research and new genetic discoveries.

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Section: Introductionmentioning

confidence: 99%

Attitude and Knowledge about Genetics and Genetic Testing

Etchegary

Cappelli

Potter

et al. 2009

Public Health Genomics

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show abstract

“…Having this information can provide individuals and organizations with power that can be used wisely and responsibly for health promotion and disease prevention or for practices that are discriminatory, such as the withholding of health insurance or rejection from a job. What constitutes misuse of genetic information is, however, not clear cut in our society; rather, discussion brings into play a host of ethical, legal, and social issues, many of which invoke fear and mistrust (Hubbard and Lewontin 1996;Garver and Garver 1994).…”

Section: Issue 2: Ethical Legal and Social Issuesmentioning

confidence: 99%

Depiction of gene-environment relationships in online medical recommendations

Cheng¹,

Condit

Flannery

2008

Genetics in Medicine

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“…In other words, the same DNA mutation can trigger quite different clinical symptoms -or none at all; conversely, one and the same disease can be triggered by different genetic variations. 34 It bears stating here not only that the predictive value of genetic information is regularly exaggerated, but also that nongenetic medical tests provide information on future health risks, such as a HIV test, a cholesterol screen, or the proof of an asymptomatic hepatitis B infection. Likewise, blood-pressure tests or proof of blood in stool are of great diagnostic importance when identifying illnesses at an early stage before the first symptoms of coronary heart disease or stomach cancer have arisen.…”

Section: Genetic Exceptionalismmentioning

confidence: 99%

Beyond genetic discrimination. Problems and perspectives of a contested notion

Lemke¹

2005

Life Sci Soc Policy

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In the recent past a number of empirical studies provided evidence that increasing genetic knowledge leads to new forms of exclusion, disadvantage and stigmatisation. As a consequence, many states have inaugurated special legislation to fight "genetic discrimination". This article focuses on some theoretical, normative and practical problems in the scientific and political debate on genetic discrimination. It puts forward the thesis that the existing antidiscrimination approach is based on the implicit idea that genes are the essence of (human) life. Since genes are held responsible for individual development and personal identity, genetic discrimination is granted a privileged legal status in comparison to other forms of discrimination. As a result the analytical and political concentration on processes of genetic discrimination may reinforce the "geneticization" of body, illness and deviance. Beyond genetic discrimination. Problems and perspectives of a contested notionThe sequencing of the human genome at the beginning of the new century marked a symbolic milestone in the progress of genetics.1 In the "post-genomic" era genetic research is about to transform concepts of health, illness and the body, and the practices of medicine and public health. Genetic tests already have been developed to identify the presence of particular alleles or polymorphisms that are linked to certain diseases. As the range and accuracy of these tests increase, many scholars anticipate a future when anyone may obtain genetic profile that can identify conditions for which he or she may be at elevated risk. Such knowledge should enable an individual to take preventive steps such as medication, medical monitoring, prophylactic surgery, or behavioural and environmental modification that may be wholly or partially effective to eliminating the onset of diseases. 2As with many other new technologies, the implementation of genetic technology raises a number of social problems. One area of concern is "genetic discrimination". As a series of empirical studies in different countries have shown the use of genetic information may lead to new forms of exclusion, disadvantaging and stigmatisation. The spectrum of genetic discrimination ranges from disadvantages in work life via problems with insurance policies through to difficulties with adoption agencies. In some cases a person was turned down for a job because there were signs of a possible later illness. Likewise, health and life insurers terminated contracts or refused to conclude these if their (potential) clients were suspected of bearing the risk of a congenital disease. In other cases, couples were not allowed to adopt children if one of the two had a predisposition for a genetic illness. Experiences of genetic discrimination were also reported from healthcare agencies, the education sector and the military.

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Pitfalls of Genetic Testing

Cited by 88 publications

References 9 publications

Attitude and Knowledge about Genetics and Genetic Testing

Attitude and Knowledge about Genetics and Genetic Testing

Depiction of gene-environment relationships in online medical recommendations

Beyond genetic discrimination. Problems and perspectives of a contested notion

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