Contributor(s)Rosolowski, Tacey Ann
KeywordsD: Understanding Cancer, the History of Science, Cancer Research ; D: The History of Health Care, Patient Care; B: MD Anderson History; B: Institutional Processes; C: Professional Practice ; C: The Professional at Work; C: Offering Care, Compassion, Help; C: Patients; C: Cancer and Disease; B: Building/Transforming the Institution; B: Critical Perspectives on MD Anderson
A: The Administrator; A: The Interview Subject's Story;
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AbstractIn this segment, Dr. Srong explain that, since her discovery of the role of the p53 gene in creating cancer risk, Dr. Strong has advocated that MD Anderson set up a genetic counseling service and support. The desire to have a clinical genetics program predated the discovery of BRCA, and Dr. Strong explains this history near the end of this segment. She begins, however, with a discussion of how the process unfolded after 1994, when the discovery of the “breast cancer gene,” BRCA, hit the media, raised many medical and social issues, and spurred women to demand genetic testing and counseling. Cancer centers all over the country had to address these issues and, though MD Anderson had many candidates for testing, Dr. Strong says that the institution was not a leader in setting up a genetic program. Eventually the administration responded to patient pressure to provide clinical genetic services. Dr. Strong lists others who agreed that genetic counseling and testing should be provided: Gordon Mill, Susan Peterson, Chris Amos, among others. They would gather informally at Baylor to discuss how to handle cases, as the medical and ethical issues raised were so new. After conversations with Robert Bast, Head of the Division of Cancer Medicine, and Frederick Becker, Vice President for Research, MD Anderson hired one genetic counselor. Dr. Strong describes how the program changed over the years, as more counselors were added to a central location, and then were decentralized, and attached to Departments where they could be effective members of teams. Dr. Strong describes the strengths and weaknesses of the programs, how unaware many researchers and clinicians are about genetic issues, and how she would like this program to grow in the next years. Here Dr. Strong describes how the decentralized Clinical Cancer Genetics Program operate. It has nine genetic counselors and offers conferences for patient education. Dr. Strong notes that the leadership is not looking at how to reorganize the program, in which most dealings with patients are handled face-to-face. They hope to offer more education through video and satellite offering. She describes the time-intensive process of working with patients to identify their risk levels and talks about an exciting development in the fall, when the Cancer Genetics Program will link with $$ PreCare software to be tested in some MD Anderson departments. This program allows a patient to complete their background information prior to coming in. Dr. Strong explains the feasibility of creating algorithms to identify patients who should be referred for genetic counseling. Dr. Strong explains that she set up the information systems for her own research, and Cancer Genetics set up their own network that can draw pedigrees and do analyses of them. This is the system that will be linked to PRECARE.
DateAugust 10, 2012