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

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 US twin population, our ability to ascertain and enroll 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, etc.) 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.