HomeResearchIntramural ResearchResearch Branches at NHGRISocial & Behavioral Research Branch Hadley Research

Don Hadley, M.S., C.G.C. Associate Investigator Social and Behavioral Research Branch Staff Scientist (Clinical) Social Network Methods Section Associate Director Office of Clinical Liaison Office of the Clinical Director B.S. Purdue University, 1976 M.S. University of California at Berkeley, 1981 (301) 496-3980 (301) 496-7157 dhadley@mail.nih.gov Building 31, Room B1B37 31 Center Dr, MSC 9999 Bethesda, MD 20892-9999 Selected Publications

Mr. Hadley is a genetic counselor and a clinical researcher. As a genetics counselor, he provides education and counseling for people with or at risk for genetic or inherited diseases participating in NIH clinical protocols. As a researcher, he evaluates methods for educating and counseling families with genetic conditions. His research is performed within the Public Health Genomics Section, led by Dr. Colleen McBride.

Mr. Hadley strives to understand the psychological and behavioral outcomes of the counseling and testing process. His clinical role gives him insight into the concerns of families considering genetic testing and the many issues they deal with following their decisions and, for some, their subsequent test results. When Mr. Hadley arrived at NHGRI in 1993, genetic testing for single gene disorders was just becoming a reality, with scientists pinpointing genes for cystic fibrosis, Huntington's disease, and hereditary breast and ovarian cancer. When these tests became widely available, there was an explosion of questions regarding families with identifiable genetic disorders' for example, how to help them make decisions about testing, what psychological and social factors might influence their decisions, and what might be the behavioral and psychological consequences of choosing or not choosing genetic testing.

Currently, Mr. Hadley's particular area of focus is addressing the many questions surrounding genetic screening for hereditary nonpolyposis colorectal cancer (HNPCC), the most common form of hereditary colon cancer. Mr. Hadley is collaborating with investigators at the National Cancer Institute to collect information from families that are at risk for developing HPNCC, based on their having a mutation in any one of six HPNCC-associated genes. In addition to collecting information from these families through detailed questionnaires, the researchers ask participants to attend a genetic education session to help them understand HNPCC and cancer screening recommendations for associated cancers, genetic testing for HNPCC, and the associated risks and benefits of these gentic tests.

His team follows both those who choose testing and those who do not and collects data from them at 6- and 12-month intervals to document how the genetic counseling and testing process influences them psychologically and guides their choices about cancer screening. Interestingly, only about half the eligible people in families with recognized mutations choose to participate in the study. It is important to understand what these people know about their cancer risks and what cancer screening practices they undergo, if any, among a host of other questions. Interestingly, many of the individuals participating in the study have raised concerns about the potential of insurance and employment discrimination based on their genetic test result. As a member of the Medical Genetics consult team, Mr. Hadley also works with families affected by other genetic diseases. For example, he is working with a large family known to carry a mutation in a gene for an early-onset form of Alzheimer's disease and helping them consider the option of presymptomatic genetic testing for known mutations. His work has shown, however, that a host of issues complicate the family's decisions, including the lack of preventive treatments to delay or prevent this devastating disease.

Mr. Hadley plans to extend his research portfolio to include the study of families with more common diseases that affect larger portions of the population. These include diseases that are known to have genetic contributions but are also influenced by other factors such as environment, lifestyle, and diet. This will be an important arena to explore as research continues to move genomics into the medical and public health arenas.

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Last Reviewed: August 18, 2008