Presymptomatic testing for Huntington chorea: Guidelines for moral and social accountability

J. F. Smurl, David Weaver

Research output: Contribution to journalArticle

18 Citations (Scopus)

Abstract

Clinical trials of a presympatomatic test for Huntington chorea (HC) are beginning, and the test may set precedents in screening for other genetic disorders in this way. Therefore, it seems an opportune time to consider the moral and social implications of such testing. The strategy proposed here takes the form of guidelines for research, development, and clinical application of the HC test and any future similar tests. The guidelines cover four stages (preliminary research, verification, refinement, and clinical application). They draw on past experience, on existing guidelines for research involving human subjects, and on some general moral and legal principles. In addition to traditional concerns about relationships between counselors and consultands, they emphasize more contemporary concerns about the interest of third parties and social institutions in what occurs in modern methods of genetic screening. In all cases, however, the guidelines are provisional and are offered here mainly for purposes of discussion and to encourage similar efforts at policymaking by those who become involved with these forms of testing.

Original languageEnglish
Pages (from-to)247-257
Number of pages11
JournalAmerican Journal of Medical Genetics
Volume26
Issue number2
StatePublished - 1986

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Huntington Disease
Social Responsibility
Guidelines
Research
Inborn Genetic Diseases
Genetic Testing
Clinical Trials

ASJC Scopus subject areas

  • Genetics(clinical)

Cite this

Presymptomatic testing for Huntington chorea : Guidelines for moral and social accountability. / Smurl, J. F.; Weaver, David.

In: American Journal of Medical Genetics, Vol. 26, No. 2, 1986, p. 247-257.

Research output: Contribution to journalArticle

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