BIOSKETCH AND RESEARCH INTERESTS
Sara J. Knight, PhD, is Professor in the Department of Medicine, Division of Preventive Medicine, at UAB, and she directs the health services research program at the Birmingham Veterans Affairs Medical Center. Dr. Knight completed her undergraduate degree in psychology at the University of Maryland, and received her MA in Counseling Psychology and PhD in Clinical Psychology from Southern Illinois University. After her internship in clinical health psychology at Rush-Presbyterian-St. Luke’s Medical Center in Chicago, she focused her work on cancer prevention and control. Before joining UAB in 2014, Dr. Knight served for three years as Deputy Director of the national VA Health Services Research and Development Service in Washington, DC.
Throughout her career, Dr. Knight has aimed to help healthcare systems and patients make the best possible decisions about healthcare and medical treatments. As a clinical health psychologist working on the hematology and oncology units at the University of Chicago and Northwestern University, she developed a passion for bringing patient perspectives into cancer care. Through research training and mentoring in health services research at the University of California at San Francisco and at the San Francisco VAMC, she constructed and tested measures of patient values, goals, and preferences, and patient-reported outcomes for prostate and colorectal cancer, and palliative care.
Dr. Knight’s current work approaches health decision making from both person and population-level perspectives. She seeks to integrate individual patient preferences in deliberations between patients and clinicians to inform treatment choices, and to capture population-level insights on patient preferences to inform healthcare system policy and planning.
Dr. Knight and colleagues have used discrete choice experiments and conjoint analysis to understand public preferences, and consumer demand, for genetic and genomic information. The alignment between patient preferences and genomic health services is key to achieving the best models of care for precision medicine. In a first study funded by the National Cancer Institute, Dr. Knight found that respondents from a US probability-based online panel said that they would want genetic testing for Lynch syndrome, a type of hereditary colorectal cancer, if the conditions were right, such as results released to primary care providers, not to insurance companies. Recently, Dr. Knight received a four-year VA award to survey a national population-based sample of Veterans about their preferences for return of secondary findings from Whole Genome Sequencing.
ABSTRACT
Background. While choices about genetic testing are increasingly common for patients and families, and public opinion surveys suggest public interest in genomics, it is not known how adults from the general population value genetic testing for heritable conditions. We sought to understand in a US sample the relative value of the characteristics of genetic tests to identify risk of hereditary colorectal cancer, among the first genomic applications with evidence to support its translation to clinical settings.
Methods. A Web-enabled choice-format conjoint survey was conducted with adults age 50 years and older from a probability-based US panel. Participants were asked to make a series of choices between 2 hypothetical blood tests that differed in risk of false-negative test, privacy, and cost. Random parameters logit models were used to estimate preferences, the dollar value of genetic information, and intent to have genetic testing.
Results. A total of 355 individuals completed choice-format questions. Cost and privacy were more highly valued than reducing the chance of a false-negative result. Most (97% [95% confidence interval (CI)], 95%-99% would have genetic testing to reduce the risk of dying of colorectal cancer in the best scenario (no false negative, results disclosed to primary care physician). Only 41% (95% CI, 25%-57%) would have genetic testing in the worst case (20% false negatives, results disclosed to insurance company).
Conclusions. Given the characteristics and levels included in the choice, if false-negative test results are unlikely and results are shared with a primary care physician, the majority would have genetic testing. As genomic services become widely available, primary care professionals will need to be increasingly knowledgeable about genetic testing decisions.
