Don Hadley, M.S., C.G.C.

National Human Genome Research Institute

National Institutes of Health
U.S. Department of Health and Human Services

Don Hadley, M.S., C.G.C.

Don Hadley
Associate Director
Office of Clinical Liaison
Office of the Clinical Director

Associate Investigator
Medical Genetics Branch

B.S. Purdue University, 1976
M.S. University of California at Berkeley, 1981

phone (301) 496-3980
fax (301) 496-7157
Building 35, Room 1B205

Selected Publications

As a researcher, Mr. Hadley focuses on understanding the factors that influence interest in and uptake of genetic services, including genetic education, counseling, and testing; he is particularly interested in psychological and behavioral outcomes. Specifically, his research examines the significant role of the family in influencing an individual's knowledge, attitudes, and behaviors related to genetic testing, with the ultimate goal of defining the individual and family variables affecting the psychological and behavioral impact of such testing. An understanding of these issues will inform the development of clinical interventions aimed at improving family communication related to disease risk and health behaviors, adaptation of those experiencing difficulty, and adherence to recommendations for health screening and disease prevention.

Mr. Hadley's work has focused on studying families with an inherited cancer susceptibility syndrome known as hereditary nonpolyposis colorectal cancer (HNPCC; also known as Lynch Syndrome). His group collects data from patients who choose to receive genetic counseling services and to consider the option of genetic testing for the disease-causing mutation in their families. Participants complete a baseline questionnaire that assesses their interest in and attitudes toward genetic testing prior to receiving genetic information. This survey documents their gen-eral mood, level of worry about cancer and genetic testing, can-cer screening practices, spiritual beliefs, and feelings about their familial communication practic-es and support. A follow-up ques-tionnaire is administered at six-month, one-year, and three-year intervals after receiving their genetic test results or choosing not to undergo testing.

Using the resulting data, Mr. Hadley's group analyzes the ways in which the genetic counseling and testing process influences participants' psychological well-being and communication about genetic risk, and evaluates how such factors guide their cancer screening choices. As only about half of the eligible family members have chosen to participate in the HNPCC study, Mr. Hadley's group now hopes to detail the perspectives and attitudes of those who opted out of genetic testing and to gain insight into their cancer screening practices.

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.

Mr. Hadley is expanding his research to more carefully consider the influence of the immediate and extended family on individual family members' knowledge and feelings about HNPCC. Genetic testing typically begins with a single individual who is affected with a disease and receives genetic testing. If a disease-causing mutation is found, then biologically close and eventually more distant relatives seek out genetic services as knowledge about the disease and testing options spreads within the family. The periodic provision of genetic information and the associated family communication has the potential to influence thoughts and behaviors of those who later come to receive genetic services. This research intends to examine whether previous experiences with genetic services and communication within the family are associated with an increase or decrease in psychological distress, perceptions of risk, genetic knowledge, and adoption of appropriate cancer screening practices. Gaining insights into social influences that may occur within the family may yield critical information for developing innovative genetic-and genomic-based education and counseling programs for families.

To extend his research portfolio, Mr. Hadley plans to include the study of families with more common diseases that affect larger segments of the population. His future studies will include diseases with genetic contributions that are also influenced by factors such as the environment, lifestyle and diet.

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Last Reviewed: August 26, 2013