Abstract
In Europe, there is a wide variety of genetic tests that various private companies offer to patients or to consumers. More and more people have become curious about their genetic predisposition and susceptibility. Most public health-care systems, however, are not adequately prepared for responding to these new demands and to the results of these genetic tests as, quite often, there is no available therapy for the identified genetic condition. This discrepancy between the newly emerging expectations and the insufficient responses contributes to a further rift between the public and private sectors of health care. Individual genetic test results may also trigger the need for personalized medicine and may open up a competition between the two fields in offering further genetic tests and medical exams. Pro-active patients may need a different kind of information on genetic tests and their implications. In this context, how should the public health system deal with the challenges of private testing? Will private genetic testing transform health care from a solidarity-based system to an individualistic one? In this paper, I would like to explore the emerging legal and ethical issues related to genetic testing and the relevant legal framework that has developed so far. In the conclusion, I will examine the possibilities of further legal development.
Highlights
The article took a startling turn, when the movie star—considered by many as one of the most beautiful women in the world, who at the peak of her career seemed to be in Genetic Testing: Private, Public Interests perfectly good health—informed the public that during the past few months her breast tissues had been surgically removed
How should genetic information be qualified, what kinds of rights can be established on this knowledge, who should hold this knowledge, and who is to control this intrinsically individual, wide-ranging information that can be obtained by others? The fine-tuning and detailed scrutiny of our biological and genetic view on humans, as well as the mapping of the entire human genome, originate from a generally understandable scientific drive, and at first sight it produces mostly neutral information
Serious ethical and legal dilemmas arise especially when this knowledge is applied in a broader social context
Summary
Most public health-care systems, are not adequately prepared for responding to these new demands and to the results of these genetic tests as, quite often, there is no available therapy for the identified genetic condition. This discrepancy between the newly emerging expectations and the insufficient responses contributes to a further rift between the public and private sectors of health care. Pro-active patients may need a different kind of information on genetic tests and their implications In this context, how should the public health system deal with the challenges of private testing?
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