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Coming to Grips with Genetic Exceptionalism: Roots and Reach of an Explanatory Model

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Medicine Studies

Abstract

Is genetic information different from other types of medical information and is therefore a special treatment required because of its special features? This question has been discussed since the mid-1990s under the label of genetic exceptionalism. This article discusses the essential arguments of the genetic exceptionalism discourse and analyzes their ethical reach. The primary question of this paper is whether the arguments of the current debate, with its predominantly scientific focus, are capable of solving the ethical questions raised by genetic exceptionalism in such a way as to do justice to the normative scope and epistemological complexity. The author argues that the current genetic exceptionalism discourse is restrictive and offers little opportunity for exploring viable and ethically justifiable solutions regarding the implementation of genetic information in medical practice. Discourses on genetic exceptionalism should not only adhere to scientifically consistent criteria but also reflect individual perceptions and cultural values, enriched by adequate historical reflection.

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Notes

  1. For a discussion of the complex term “genetic information” cf. Richards 2001; Suter 2001; Manson 2006.

  2. A quick search for such books at amazon.com yielded over 500 titles on the prevention of cancer in the section on “books” alone.

  3. The “hype” over the drug Tamoxifen is a vivid example of the loss of women’s autonomy caused by a discourse on embodied genetic risk; cf. Poe 1999.

  4. There might be a genetic contribution to the controllability of external risks, however, like resistance to HIV infections found in CCR5-delta32-Allel-carriers, but this does not change the fact that genetic risk is different from health risks that can be addressed by behavioral or environmental prevention on a categorical level.

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Acknowledgments

This study was initiated and supported by the German National Genome Research Network, NGFN2 (supported by the German Ministry of Science and Education, BMBF 01GR0467), project “Public Health Genetics”. 1. The author would like to thank Prof. Dr. Norbert W. Paul, Dr. Meike Wolf, Dr. Rainer Brömer, Prof. Dr. Robert Cook-Deegan (Duke University) and Prof. Dr. Lauren Dame (Duke University) for their important comments and critical perusal of this manuscript.

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  1. Institute for History, Philosophy and Ethics of Medicine, Johannes Gutenberg University Mainz, Am Pulverturm 13, 55131, Mainz, Germany

    Ilhan Ilkilic

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Ilkilic, I. Coming to Grips with Genetic Exceptionalism: Roots and Reach of an Explanatory Model. Medicine Studies 1, 131–142 (2009). https://doi.org/10.1007/s12376-009-0015-7

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