Incorporating ethnicity into genetic risk assessment for Alzheimer disease: The REVEAL study experience

Kurt D. Christensen, J. Scott Roberts, Charmaine D M Royal, Grace Ann Fasaye, Thomas Obisesan, L. Adrienne Cupples, Peter J. Whitehouse, Melissa Barber Butson, Erin Linnenbringer, Norman R. Relkin, Lindsay Farrer, Robert Cook-Deegan, Robert C. Green

Research output: Contribution to journalArticle

31 Citations (Scopus)

Abstract

PURPOSE: To describe how investigators in a multisite randomized clinical trial addressed scientific and ethical issues involved in creating risk models based on genetic testing for African American participants. METHODS: The following informed our decision whether to stratify risk assessment by ethnicity: evaluation of epidemiological data, appraisal of benefits and risks of incorporating ethnicity into calculations, and feasibility of creating ethnicity-specific risk curves. Once the decision was made, risk curves were created based on data from a large, diverse study of first-degree relatives of patients with Alzheimer disease. RESULTS: Review of epidemiological data suggested notable differences in risk between African Americans and whites and that Apolipoprotein E genotype predicts risk in both groups. Discussions about the benefits and risks of stratified risk assessments reached consensus that estimates based on data from whites should not preclude enrolling African Americans, but population-specific risk curves should be created if feasible. Risk models specific to ethnicity, gender, and Apolipoprotein E genotype were subsequently developed for the randomized clinical trial that oversampled African Americans. CONCLUSION: The Risk Evaluation and Education for Alzheimer Disease study provides an instructive example of a process to develop risk assessment protocols that are sensitive to the implications of genetic testing for multiple ethnic groups with differing levels of risk.

Original languageEnglish (US)
Pages (from-to)207-214
Number of pages8
JournalGenetics in Medicine
Volume10
Issue number3
DOIs
StatePublished - Mar 2008
Externally publishedYes

Fingerprint

Alzheimer Disease
African Americans
Genetic Testing
Apolipoproteins E
Randomized Controlled Trials
Genotype
Ethnic Groups
Ethics
Consensus
Research Personnel
Education
Population

Keywords

  • Alzheimer
  • APOE
  • Ethnicity
  • Genetics
  • Risk

ASJC Scopus subject areas

  • Genetics(clinical)
  • Genetics

Cite this

Christensen, K. D., Roberts, J. S., Royal, C. D. M., Fasaye, G. A., Obisesan, T., Cupples, L. A., ... Green, R. C. (2008). Incorporating ethnicity into genetic risk assessment for Alzheimer disease: The REVEAL study experience. Genetics in Medicine, 10(3), 207-214. https://doi.org/10.1097/GIM.0b013e318164e4cf

Incorporating ethnicity into genetic risk assessment for Alzheimer disease : The REVEAL study experience. / Christensen, Kurt D.; Roberts, J. Scott; Royal, Charmaine D M; Fasaye, Grace Ann; Obisesan, Thomas; Cupples, L. Adrienne; Whitehouse, Peter J.; Butson, Melissa Barber; Linnenbringer, Erin; Relkin, Norman R.; Farrer, Lindsay; Cook-Deegan, Robert; Green, Robert C.

In: Genetics in Medicine, Vol. 10, No. 3, 03.2008, p. 207-214.

Research output: Contribution to journalArticle

Christensen, KD, Roberts, JS, Royal, CDM, Fasaye, GA, Obisesan, T, Cupples, LA, Whitehouse, PJ, Butson, MB, Linnenbringer, E, Relkin, NR, Farrer, L, Cook-Deegan, R & Green, RC 2008, 'Incorporating ethnicity into genetic risk assessment for Alzheimer disease: The REVEAL study experience', Genetics in Medicine, vol. 10, no. 3, pp. 207-214. https://doi.org/10.1097/GIM.0b013e318164e4cf
Christensen, Kurt D. ; Roberts, J. Scott ; Royal, Charmaine D M ; Fasaye, Grace Ann ; Obisesan, Thomas ; Cupples, L. Adrienne ; Whitehouse, Peter J. ; Butson, Melissa Barber ; Linnenbringer, Erin ; Relkin, Norman R. ; Farrer, Lindsay ; Cook-Deegan, Robert ; Green, Robert C. / Incorporating ethnicity into genetic risk assessment for Alzheimer disease : The REVEAL study experience. In: Genetics in Medicine. 2008 ; Vol. 10, No. 3. pp. 207-214.
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