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Barbara B. Biesecker, M.S. Associate Investigator Social and Behavioral Research Branch Head Genetic Services Research Unit Director JHU/NHGRI Genetic Counseling Training Program B.A. St. Olaf College, 1979 M.S. University of Michigan, 1981 (301) 496-3979 (301) 480-3108 barbarab@mail.nih.gov Building 31, Room B1B36 31 Center Dr, MSC 2073 Bethesda, MD 20892-2073 Selected Publications The Johns Hopkins University/National Human Genome Research Institute Genetic Counseling Graduate Program

Ms. Biesecker's research and teaching activities focus on making genetic counseling as effective as possible. This is an area of growing importance, as new genetic technologies bring with them an avalanche of new information and questions about what testing of our genes can reveal. Currently, behavioral researchers have little empirical evidence to inform best practices for helping people choose how to use their own genetic information in making health and reproductive decisions. Ms. Biesecker's training as a genetic counselor greatly informs her research, and her research program is focused on identifying cutting-edge approaches that have high clinical significance and the potential for direct improvements in practice.

To that end, the major focus of Ms. Biesecker's research is determining how genetic counseling can improve people's decision-making and coping abilities. Her work is centered on three major thematic areas: (1) the role of ambivalence in deciding whether to undergo prenatal testing; (2) how clients adapt to living with a genetic condition or being at increased risk; and (3) psychological factors that influence decisions about multiplex genetic testing.

Ms. Biesecker has a considerable research track record as one of a small group of clinical researchers who have explored psychological adaptation to a variety of rare genetic disorders. Her past work included consideration of factors influencing adaptation to living at risk for Huntington disease or Neurofibromatosis type I, and to parenting a child with a pervasive developmental disorder or Down syndrome. In each of these scenarios, adaptation was measured as an outcome of the process of coping with the condition. Ms. Biesecker, in collaboration with Dr. Lori Erby at The Johns Hopkins University and collaborators from the Patient-Reported Outcomes Measurement Information System (PROMIS) NIH Roadmap Initiative, has developed an adaptation scale that includes four sub-domains: self-esteem, spiritual and psychological well-being, response to coping, and social integration. The scale has been evaluated with confirmatory factor analysis and appears to reliably measure the multiple facets of adaption; it can be used to understand adaptation across different populations. Each of these studies has identified predictors of adaptation, and future studies of potential interventions to improve adaptation are planned.

Currently, Ms. Biesecker is conducting a pilot study to inform a larger, randomized control trial investigating women's ambivalence toward prenatal testing and how a genetic counseling intervention might benefit them. Genetic prenatal testing has been available for several decades, primarily to determine whether a developing fetus has a chromosomal abnormality. Ambivalence about such testing (endorsing both pros and cons) has been shown to influence decisions and lead to less informed choices. This study is aimed at exploring ways to reduce ambivalence and enhance informed choices.

In the early 1990s, Ms. Biesecker and her colleagues established The Johns Hopkins University/NHGRI Genetic Counseling Training Program, which she continues to direct. This graduate program brings together valuable resources from both institutions and from numerous clinical training sites throughout the region. Its goal is to produce genetic counselors skilled in therapeutic counseling and in genetic counseling research methods.

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Last Updated: September 23, 2009