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 Horsma; William 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

doi:10.1089/gte.1999.3.3

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 journal › Review article › peer-review

47 Scopus citations

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 language	English
Pages (from-to)	3-12
Number of pages	10
Journal	Genetic Testing
Volume	3
Issue number	1
DOIs	https://doi.org/10.1089/gte.1999.3.3
State	Published - 1999

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McConnell, L. M., Koenig, B. A., Greely, H. T., Raffin, T. A., 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., ... Yeo, G. (1999). Genetic testing and Alzheimer disease: Recommendations of the Stanford Program in Genomics, Ethics, and Society. Genetic Testing, 3(1), 3-12. https://doi.org/10.1089/gte.1999.3.3

@article{e4ec7d880aae4344a434894246dba3b0,

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

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.",

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

year = "1999",

doi = "10.1089/gte.1999.3.3",

language = "English",

volume = "3",

pages = "3--12",

journal = "Genetic Testing",

issn = "1090-6576",

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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. https://doi.org/10.1089/gte.1999.3.3

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T1 - Genetic testing and Alzheimer disease

T2 - Recommendations of the Stanford Program in Genomics, Ethics, and Society

AU - McConnell, Laura M.

AU - Koenig, Barbara A.

AU - Greely, Henry T.

AU - Raffin, Thomas A.

AU - Caulfield, Timothy

AU - Chandra, Ravi

AU - Chun, Nicki

AU - Coon, David

AU - Davies, Helen

AU - Dembitzer, Anne

AU - Eaton, Margaret

AU - Edgerly, Elizabeth

AU - Eswara, Marthand

AU - Fogarty, Mignon

AU - Fox, Patrick

AU - Gallagher-Thompson, Dolores

AU - Goldstein, Mary

AU - Hirtle, Marie

AU - Holtzman, Samuel

AU - Horsma, H. Geraldine

AU - Hurlbut, William

AU - Kaplan, Jonathan

AU - Kelly, Susan

AU - Klepper, Howard

AU - Kobori, Joyce

AU - Lam, Eu Meng

AU - Logan, Beth

AU - Mortiz, Deborah

AU - Neidich, Julie Ann

AU - Powell, Traci

AU - Rorty, Mary

AU - Silverberg, Heather

AU - Silvers, Anita

AU - Stefanac, Susan

AU - Stockdale, Alan

AU - Thaler, Michael

AU - Tobin, Sara

AU - Yeo, Gwen

PY - 1999

Y1 - 1999

N2 - 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.

AB - 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.

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U2 - 10.1089/gte.1999.3.3

DO - 10.1089/gte.1999.3.3

M3 - Review article

C2 - 10464572

AN - SCOPUS:0032965722

SN - 1090-6576

VL - 3

SP - 3

EP - 12

JO - Genetic Testing

JF - Genetic Testing

IS - 1

ER -

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

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