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The Feasibility of Creating a Population-Based National Twin Registry in the United States

Published online by Cambridge University Press:  21 February 2012

Patricia C. Chulada*
Affiliation:
Program in Clinical Research, National Institute of Environmental Health Sciences, North Carolina, United States of America. chulada@niehs.nih.gov
Linda A. Corey
Affiliation:
Virginia Institute for Psychiatric and Behavioral Genetics, Virginia Commonwealth University, Richmond, Virginia, United States of America.
Vani Vannappagari
Affiliation:
GlaxoSmithKline, Research and Development, North Carolina, United States of America.
Nedra S. Whitehead
Affiliation:
Statistics and Epidemiology, Research Triangle Institute, Atlanta, Georgia, United States of America.
Perry J. Blackshear
Affiliation:
Program in Clinical Research, National Institute of Environmental Health Sciences, North Carolina, United States of America.
*
*Address for correspondence: Patricia C. Chulada, Program in Clinical Research, National Institute of Environmental Health Sciences, P.O. Box 12233, Research Triangle Park, NC, USA.

Abstract

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Between 4 to 6 million twins exist in the US today who offer scientists a valuable potential resource for conducting behavioral and biomedical research. However, unlike many other countries, there is no national system in the US for identifying twins and eliciting their participation in these important research programs. Therefore, the National Institute of Environmental Health Sciences (NIEHS) is conducting a study to determine the feasibility of creating a national, population-based twin registry in the US. The major goal is to estimate the potential size and characteristics of a national twin registry based on the current twin population in the US, our ability to ascertain and enrol them, and their willingness to participate. Existing US twin cohorts are also being examined in this study as well as alternatives for improving US twin resources should a national twin registry be deemed infeasible. The various options will be compared in terms of possible source populations, generalizability and adequacy for statistically powering various types of etiological studies. Two expert advisory panels have been assembled to assist in the conduct of this study. The Scientific Advisory Panel is charged with providing expertise concerning study goals, design and methodology, and evaluating the study's conclusion. A separate Ethics Advisory Panel is charged with providing expertise on the ethical, legal, and social issues that might be encountered if a national twin registry is ultimately pursued. Having a national population-based twin registry in the US would be advantageous to US scientists and those worldwide. It would provide ample numbers of twin pairs to conduct various types of environmental genomic studies currently not possible with existing US twin resources. It would also allow US scientists to select for characteristics (race, ethnicity, environments, and so on) inherent in our own population. Finally and foremost, it would help to meet the worldwide demand for twin resources which is expected to increase over time, as new genomic and analytical tools become available and new hypotheses emerge concerning the complex interplay between genes, lifestyles and environment.

Type
Articles/United States of America
Copyright
Copyright © Cambridge University Press 2006