Genetic testing and Alzheimer disease: Recommendations of the Stanford Program in Genomics, Ethics, and Society

Laura M. McConnell, Barbara A. Koenig, Henry T. Greely, Thomas A. Raffin, Timothy Caulfield, Ravi Chandra, Nicki Chun, David Coon, Helen Davies, Anne Dembitzer, Margaret Eaton, Elizabeth Edgerly, Marthand Eswara, Mignon Fogarty, Patrick Fox, Dolores Gallagher-Thompson, Mary Goldstein, Marie Hirtle, Samuel Holtzman, H. Geraldine HorsmaWilliam Hurlbut, Jonathan Kaplan, Susan Kelly, Howard Klepper, Joyce Kobori, Eu Meng Lam, Beth Logan, Deborah Mortiz, Julie Ann Neidich, Traci Powell, Mary Rorty, Heather Silverberg, Anita Silvers, Susan Stefanac, Alan Stockdale, Michael Thaler, Sara Tobin, Gwen Yeo

Research output: Contribution to journalArticle

43 Citations (Scopus)

Abstract

Several genes associated with Alzheimer disease (AD) have been localized and cloned; two genetic tests are already commercially available, and new tests are being developed. Genetic testing for AD - either for disease prediction or for diagnosis - raises critical ethical concerns. The multidisciplinary Alzheimer Disease Working Group of the Stanford Program in Genomics, Ethics, and Society (PGES) presents comprehensive recommendations on genetic testing for AD. The Group concludes that under current conditions, genetic testing for AD prediction or diagnosis is only rarely appropriate. Criteria for judging the readiness of a test for introduction into routine clinical practice typically rely heavily on evaluation of technical efficacy. PGES recommends a broader and more comprehensive approach, considering: 1) the unique social and historical meanings of AD; 2) the availability of procedures to promote good surrogate decision making for incompetent patients and to safeguard confidentiality; 3) access to sophisticated genetic counselors able to communicate complex risk information and effectively convey the social costs and psychological burdens of testing, such as unintentional disclosure of predictive genetic information to family members; 4) protection from inappropriate advertising and marketing of genetic tests; and 5) recognition of the need for public education about the meaning and usefulness of predictive and diagnostic tests for AD. In this special issue of Genetic Testing, the PGES recommendations are published along with comprehensive background papers authored by Working Group members.

Original languageEnglish (US)
Pages (from-to)3-12
Number of pages10
JournalGenetic Testing
Volume3
Issue number1
StatePublished - 1999
Externally publishedYes

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Inborn Genetic Diseases
Genetic Testing
Genomics
Ethics
Alzheimer Disease
Confidentiality
Disclosure
Marketing
Routine Diagnostic Tests
Decision Making
Psychology
Education
Costs and Cost Analysis
Genes

ASJC Scopus subject areas

  • Genetics(clinical)

Cite this

McConnell, L. M., Koenig, B. A., Greely, H. T., Raffin, T. A., Caulfield, T., Chandra, R., ... Yeo, G. (1999). Genetic testing and Alzheimer disease: Recommendations of the Stanford Program in Genomics, Ethics, and Society. Genetic Testing, 3(1), 3-12.

Genetic testing and Alzheimer disease : Recommendations of the Stanford Program in Genomics, Ethics, and Society. / McConnell, Laura M.; Koenig, Barbara A.; Greely, Henry T.; Raffin, Thomas A.; Caulfield, Timothy; Chandra, Ravi; Chun, Nicki; Coon, David; Davies, Helen; Dembitzer, Anne; Eaton, Margaret; Edgerly, Elizabeth; Eswara, Marthand; Fogarty, Mignon; Fox, Patrick; Gallagher-Thompson, Dolores; Goldstein, Mary; Hirtle, Marie; Holtzman, Samuel; Horsma, H. Geraldine; Hurlbut, William; Kaplan, Jonathan; Kelly, Susan; Klepper, Howard; Kobori, Joyce; Lam, Eu Meng; Logan, Beth; Mortiz, Deborah; Neidich, Julie Ann; Powell, Traci; Rorty, Mary; Silverberg, Heather; Silvers, Anita; Stefanac, Susan; Stockdale, Alan; Thaler, Michael; Tobin, Sara; Yeo, Gwen.

In: Genetic Testing, Vol. 3, No. 1, 1999, p. 3-12.

Research output: Contribution to journalArticle

McConnell, LM, Koenig, BA, Greely, HT, Raffin, TA, Caulfield, T, Chandra, R, Chun, N, Coon, D, Davies, H, Dembitzer, A, Eaton, M, Edgerly, E, Eswara, M, Fogarty, M, Fox, P, Gallagher-Thompson, D, Goldstein, M, Hirtle, M, Holtzman, S, Horsma, HG, Hurlbut, W, Kaplan, J, Kelly, S, Klepper, H, Kobori, J, Lam, EM, Logan, B, Mortiz, D, Neidich, JA, Powell, T, Rorty, M, Silverberg, H, Silvers, A, Stefanac, S, Stockdale, A, Thaler, M, Tobin, S & Yeo, G 1999, 'Genetic testing and Alzheimer disease: Recommendations of the Stanford Program in Genomics, Ethics, and Society', Genetic Testing, vol. 3, no. 1, pp. 3-12.
McConnell LM, Koenig BA, Greely HT, Raffin TA, Caulfield T, Chandra R et al. Genetic testing and Alzheimer disease: Recommendations of the Stanford Program in Genomics, Ethics, and Society. Genetic Testing. 1999;3(1):3-12.
McConnell, Laura M. ; Koenig, Barbara A. ; Greely, Henry T. ; Raffin, Thomas A. ; Caulfield, Timothy ; Chandra, Ravi ; Chun, Nicki ; Coon, David ; Davies, Helen ; Dembitzer, Anne ; Eaton, Margaret ; Edgerly, Elizabeth ; Eswara, Marthand ; Fogarty, Mignon ; Fox, Patrick ; Gallagher-Thompson, Dolores ; Goldstein, Mary ; Hirtle, Marie ; Holtzman, Samuel ; Horsma, H. Geraldine ; Hurlbut, William ; Kaplan, Jonathan ; Kelly, Susan ; Klepper, Howard ; Kobori, Joyce ; Lam, Eu Meng ; Logan, Beth ; Mortiz, Deborah ; Neidich, Julie Ann ; Powell, Traci ; Rorty, Mary ; Silverberg, Heather ; Silvers, Anita ; Stefanac, Susan ; Stockdale, Alan ; Thaler, Michael ; Tobin, Sara ; Yeo, Gwen. / Genetic testing and Alzheimer disease : Recommendations of the Stanford Program in Genomics, Ethics, and Society. In: Genetic Testing. 1999 ; Vol. 3, No. 1. pp. 3-12.
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