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Issues concerning the evaluation and regulation of predictive genetic testing

Abstract

This paper is a précis of my keynote address at the Symposium on Predictive Genetic Testing organised by the Robert Koch Institute in Berlin. The talk is based on reflections which I have had over a number of years on genetic testing and its evaluation and regulation. It presents a thesis, which I hope will generate discussion and comment. A theme which will run through the paper is the need for precise definition of terms before making any normative statement about such terms. Our failure to do so in genetic discourse is at best confusing and at worst capable of resulting in inappropriate (and sometimes harmful) regulatory responses.

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Correspondence to R. L. Zimmern.

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Special Issue: Predictive Genetic Testing, Risk Communication and Risk Perception.

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Zimmern, R.L. Issues concerning the evaluation and regulation of predictive genetic testing. J Community Genet 5, 49–57 (2014). https://doi.org/10.1007/s12687-012-0111-3

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Keywords

  • Genetic Test
  • Genetic Discrimination
  • Predictive Genetic Test
  • Robert Koch Institute
  • Heritable Disorder