Your Medical Mind_ How to Decide What Is Right for You - Jerome Groopman [124]
127 BRCA testing is the leading edge of genetic testing. In 2000, the human genome was deciphered, the DNA sequence of our twenty thousand expressed genes. The media heralded this achievement as unveiling “the code of life,” a detailed blueprint that reveals how each of us is designed. The DNA code was made publicly available, posted on the Internet, by government scientists. At the same time, biotech companies announced that they would offer, for a fee, a personal profile of your genes, providing information on your predisposition for a wide variety of diseases. A heated debated ensued among scientists, ethicists, psychologists, and clinicians. How much do people want to know about the odds of a future malady? What can they do with this information? The question of whether to be tested or not, and the consequences of the knowledge, centers on loss aversion. Recall that we experience loss more profoundly than gain, and this causes many people to focus on the side effects of the choice rather than its potential benefits. The side effects in learning that you have a genetic predisposition to a disease are primarily emotional: anxiety, fear, frustration, and worry, not only about yourself but about your siblings and your children. These negative emotions are compounded when there currently is little to do about lowering the chances of the future malady, as is the case with Alzheimer’s disease. Some other people seek information on risk, believing this will help them set priorities in life or prompt them to enter a research study and contribute to science. See Steven Pinker, “My genome, my self,” New York Times Magazine , January 11, 2009; Francis S. Collin, The Language of Life: DNA and the Revolution in Personalized Medicine (New York: HarperCollins, 2010).
129 Hodgkin’s lymphoma is one of the most studied cancers, but only within the past decade has it become clear that the malignancy arises from B lymphocytes and may be related in some cases to Epstein-Barr virus infection; see Ralf Küppers, “The biology of Hodgkin’s lymphoma,” Nature Reviews Cancer 9 (2009), pp. 15–27. Therapy of advanced Hodgkin’s lymphoma in the United States, Europe, and Israel is detailed in Sandra J. Horning, “Risk, cure and complications in advanced Hodgkin disease,” Hematology 2007, pp. 197–203; Peter J. Hoskin et al., “Randomized comparison of the Stanford V regimen and ABVD in the treatment of advanced Hodgkin’s lymphoma: United Kingdom National Cancer Research Institute Lymphoma Group Study ISRCTN 64141244,” JCO 27 (2009), pp. 5390–5396; Eldad J. Dann et al., “Risk-adapted BEACOPP regimen can reduce the cumulative dose of chemotherapy for standard and high-risk Hodgkin lymphoma with no impairment of outcome,” Blood 109 (2007), pp. 905–909.
131 The history of progress in treatment of Hodgkin’s lymphoma is described in Siddhartha Mukherjee, The Emperor of All Maladies: A Biography of Cancer (New York: Charles Scribner’s Sons, 2010).
134 The issue of patient autonomy is addressed in depth in Carl E. Schneider, The Practice of Autonomy: Patients, Doctors, and Medical Decisions (New York: Oxford University Press, 1998). The actress Jill Clayburgh died in 2010. After her death, it became known that she had had chronic lymphocytic leukemia for many years and had kept the diagnosis secret so as not to limit her career.
CHAPTER 7: DECISION ANALYSIS