The Genetics Services Unit, founded in 2004 within the Social and Behavioral Research Branch, pursues research on the implementation of new genetic and genomic technologies and their impact on affected individuals and families. This unit is home to the Johns Hopkins University/National Human Genome Research Institute Genetic Counseling Program. Research in the unit provides evidence to inform genetic counseling practice and training.
Barbara Bowles Biesecker completed her BA at St. Olaf College in 1979. The University of Michigan awarded her an M.S. in human genetics in 1981. In 2011, she earned a Ph.D. in health psychology from Kings College London.
Dr. Biesecker served in several academic positions, including at the University of Wisconsin and the University of Michigan. She entered the field of clinical genetic counseling during this time. At the University of Michigan, she worked with current NIH Director Francis Collins, M.D., Ph.D., counseling patients enrolled in research to identify gene mutations responsible for hereditary hemorrhagic telangiectasia and hereditary breast and ovarian cancer. She and colleagues counseled the first extended family identified with a BRCA1 mutation by linkage analysis.
In 1993, Dr. Biesecker joined the National Center for Human Genomics Research, which became the National Human Genome Research Institute (NHGRI). She conducted studies on the return of results from hereditary breast and ovarian cancer testing with Caryn Lerman, Ph.D., then at Lombardi Cancer Center and Jeffrey Struewing, M.D., NHGRI, then at the National Cancer Institute (NCI), NIH. She became interested in studying the impact of living with such genetic conditions as achondroplasia, Turner syndrome and Marfan syndrome.
In 2005, as a member of NHGRI's newly established Social and Behavioral Research Branch, she expanded her research efforts into studies of coping and adaptation to genetic conditions, and outcomes of decisions to learn results from prenatal testing, multiplex common disease testing and, more recently, genome/exome sequencing. During this time, she conducted her doctoral studies focused on informed decision making, advised by Theresa Marteau, Ph.D., of the University of Cambridge.
Dr. Biesecker has collaborated with Holly Peay, clinical genetic counselor, for more than 10 years. Most recently, they have studied participation in clinical trials for Duchenne muscular dystrophy. This work has informed further studies into the hopes and expectations of parents with affected children enrolled in clinical trails for other rare disorders. Finally, Dr. Biesecker has been instrumental in fostering social and behavioral research in collaboration with the NHGRI ClinSeq® cohort and with William Klein, Ph.D., NCI, and Paul Han, M.D., Maine Medical Center.
Dr. Biesecker has taught several courses within The Johns Hopkins University/National Human Genome Research Institute Genetic Counseling Training Program. She also serves as thesis advisor to genetic counseling graduate students, more than 20 of whom have published their thesis research in peer-reviewed journals.
Among the awards Dr. Biesecker has received are the inaugural Diane Baker Alumnae Lecture Award from the University of Michigan, and NIH Director's awards for mentoring and for the Katrina Missing Persons Effort. She served as president of the National Society of Genetic Counselors in 1989, and has recently held several task force positions in the society.
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Last Updated: January 5, 2015