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Working up policy : the use of specific disease exemplars in formulating general principles governing childhood genetic testing.

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Working up policy : the use of specific disease exemplars in formulating general principles governing childhood genetic testing. / Boddington, Paula; Hogben, Susan.
In: Health Care Analysis, Vol. 14, No. 1, 03.2006, p. 1-13.

Research output: Contribution to Journal/MagazineJournal articlepeer-review

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Boddington P, Hogben S. Working up policy : the use of specific disease exemplars in formulating general principles governing childhood genetic testing. Health Care Analysis. 2006 Mar;14(1):1-13. doi: 10.1007/s10728-006-0007-7

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Boddington, Paula ; Hogben, Susan. / Working up policy : the use of specific disease exemplars in formulating general principles governing childhood genetic testing. In: Health Care Analysis. 2006 ; Vol. 14, No. 1. pp. 1-13.

Bibtex

@article{1672da5ebd6648019417ec723f44d8a0,
title = "Working up policy : the use of specific disease exemplars in formulating general principles governing childhood genetic testing.",
abstract = "Non-therapeutic genetic testing in childhood presents a “myriad of ethical questions”; questions which are discussed and resolved in professional policy and position statements. In this paper we consider an underdiscussed but strongly influential feature of policy-making, the role of selective case and exemplar in the production of general recommendations. Our analysis, in the tradition of rhetoric and argumentation, examines the predominate use of three particular disease exemplar (Huntington{\textquoteright}s disease, Tay-Sachs disease and sickle cell disease) to argue for or against particular genetic tests (predictive testing and testing for carrier status). We discuss the influence these choices have on the type and strength of subsequent recommendations. We argue that there are lessons to be drawn about how genetic diseases are conceptualised and we caution against the geneticisation of medical policy making.",
keywords = "Genetic testing - Geneticisation - Huntington{\textquoteright}s disease - Policy-making - Tay Sachs{\textquoteright} disease - Sickle cell disease - Stigma",
author = "Paula Boddington and Susan Hogben",
year = "2006",
month = mar,
doi = "10.1007/s10728-006-0007-7",
language = "English",
volume = "14",
pages = "1--13",
journal = "Health Care Analysis",
issn = "1065-3058",
publisher = "Springer Netherlands",
number = "1",

}

RIS

TY - JOUR

T1 - Working up policy : the use of specific disease exemplars in formulating general principles governing childhood genetic testing.

AU - Boddington, Paula

AU - Hogben, Susan

PY - 2006/3

Y1 - 2006/3

N2 - Non-therapeutic genetic testing in childhood presents a “myriad of ethical questions”; questions which are discussed and resolved in professional policy and position statements. In this paper we consider an underdiscussed but strongly influential feature of policy-making, the role of selective case and exemplar in the production of general recommendations. Our analysis, in the tradition of rhetoric and argumentation, examines the predominate use of three particular disease exemplar (Huntington’s disease, Tay-Sachs disease and sickle cell disease) to argue for or against particular genetic tests (predictive testing and testing for carrier status). We discuss the influence these choices have on the type and strength of subsequent recommendations. We argue that there are lessons to be drawn about how genetic diseases are conceptualised and we caution against the geneticisation of medical policy making.

AB - Non-therapeutic genetic testing in childhood presents a “myriad of ethical questions”; questions which are discussed and resolved in professional policy and position statements. In this paper we consider an underdiscussed but strongly influential feature of policy-making, the role of selective case and exemplar in the production of general recommendations. Our analysis, in the tradition of rhetoric and argumentation, examines the predominate use of three particular disease exemplar (Huntington’s disease, Tay-Sachs disease and sickle cell disease) to argue for or against particular genetic tests (predictive testing and testing for carrier status). We discuss the influence these choices have on the type and strength of subsequent recommendations. We argue that there are lessons to be drawn about how genetic diseases are conceptualised and we caution against the geneticisation of medical policy making.

KW - Genetic testing - Geneticisation - Huntington’s disease - Policy-making - Tay Sachs’ disease - Sickle cell disease - Stigma

U2 - 10.1007/s10728-006-0007-7

DO - 10.1007/s10728-006-0007-7

M3 - Journal article

VL - 14

SP - 1

EP - 13

JO - Health Care Analysis

JF - Health Care Analysis

SN - 1065-3058

IS - 1

ER -