Federal Trade Commission
600 Pennsylvania Ave. N.W.,
Washington, D.C. 20580
Re: Gramm-Leach-Bliley Act Privacy Rule, 16 CFR Part 313 Comment.
Dear Sir or Madam:
I submit the following comments regarding the proposed rules for implementing Title V of the Gramm-Leach-Bliley Act.
It is my understanding that the proposed rules could restrict the ability of consumer reporting agencies to disclose basic contact information (name, address, telephone number) found on credit headers. Such information can be of great value to research institutions attempting to trace individuals whom they have targeted for invitation into research studies. The restriction of such information would adversely affect research efforts at my institution, and I believe it would also adversely affect the successful conduct of health-related research directed by other universities and non-profit institutions for the benefit of the general public.
I conduct research on human health and behavioral problems with the gracious assistance of volunteers from a large, population-based twin registry located at my institution. Members of this twin registry, which is one of the largest in the United States, are willing to consider participating in health-related research. Participants of this registry have taken part in studies on the causes of diseases and disorders that are top killers in our nation: heart disease, cancer, and diabetes, as well as other diseases and conditions such as epilepsy, obesity, attention-deficit hyperactivity disorder, depression, anxiety, alcoholism, and abuse of nicotine and other drugs. These studies have been conducted by researchers from my institution as well as from institutions and universities such as the National Institutes of Health (National Cancer Institute, National Institute of Mental Health, National Institute on Drug Abuse, National Institute on Neurological Disorders and Stroke, National Institute of Environmental Health Sciences), Veterans Affairs Medical Centers, Duke University, Harvard University, The University of North Carolina, The University of California, and the University of Washington.
Twins are a unique resource for health-related research because of their shared genetic makeupidentical twins have the same genes, while fraternal, or non-identical twins, share about 50% of their genes. Comparing the extent to which identical and fraternal twins resemble each other for particular characteristics enables investigators to unravel the complex influences of genes and the environment on human behavior and medical conditions. A conventional method for population-based registries to identify twins is to access birth records. Our registry has special agreements with the registrars of several states to access the names, dates of birth, and address information (if available) of twins born from about 1915 to present. Identifying twins from birth records enables population-based twin registries to attempt to contact all of the many tens or hundreds of thousands of twins born in a specific catchment area (state or region) and thus develop a population-based registry, rather than recruit self-selected twins through advertisement. The importance of having a population-based registry is that results from research are applicable to all people in the population. Studies that recruit individuals through advertisement are prone to "volunteer bias," a condition that occurs because people who volunteer non-randomly to participate in research often possess characteristics that can bias research results.
Address information from birth records provides a starting point for locating an adult twin or family with juvenile twins, but the mobility of society requires additional methods for tracing twins. One of these methods is the access of name and address information from credit headers. These sources are of particular value to researchers in locating adult twins, nearly all of whom have moved from their birth address.
Many non-profit researchers use credit header data to trace and locate potential subjects for population-based research. Loss of this resource would substantially inhibit medical researchers ability to locate such subjects, thus reducing the potential representativeness of the research subject pool and lessening the quality and usefulness of the resulting research. Scientific progress in the understanding of disease could suffer if researchers are handicapped in their ability to locate potential research subjects. As a researcher trying to discover reasons for certain health and behavioral problems, I urge you to revise the proposed rule to make it clear that the proposed rule does not limit researchers ability to obtain and use credit header information to further our research.
Thank you for your consideration of my comments.
Please contact me at the address and phone below if you should have any questions about my comments.
E. Lenn Murrelle, M.S.P.H., Ph.D.