ASH Clinical News ACN_4.13_full issue_Web | Page 66

BACK of the BOOK Heard in the Blogosphere The Biden Cancer Summit In September 2018, former Vice President Joe Biden and Jill Biden, EdD, hosted the national Biden Cancer Summit to bring together clinicians, researchers, and patients to share information about the latest therapeutic discoveries in oncol- ogy. Below is a selection of updates from the summit: Roy Jensen, MD @RoyJensenMD Love the Laura Esserman quote “our treatments need to look more like trials and our trials need to look more like treatments” #BidenCancerSummit Has Transparency Helped Prevent Corruption in Medical Research? “Disclosure is better than no disclosure, but it does not eliminate the conflict of interest. It’s simply a way of saying caveat emptor, and leaving it to readers to decide whether the research was biased. But most people – even doctors and science reporters – aren’t really equipped to make those judgments, particularly when data are suppressed. … Collaboration with industry can lead to important scientific contributions, but we should not let drug companies buy the hearts and minds of researchers. The cost of this is high, and not just in drug prices. It means both doctors and patients believe prescription drugs are better and safer than they really are.” —Marcia Angell, MD, on the uneasy collaboration between clinician-researchers and the pharmaceutical industry, in The New York Times Donna Young @DonnaYoungDC @DrBiden: If we never spent another dime on finding new cures, we could still save thousands of lives by doing one thing: breaking down the barriers & sharing the knowledge that already exists. Luke Timmerman @ldtimmerman @wilbanks says we can’t just put EHRs together and then cures will magically fall out. Building big databases not the answer. We have to start with the queries researchers want to ask, and then build, working backwards. Biden Cancer Initiative @BidenCancer Thank you so much for joining us today during the #BidenCancerSummit. Together we can make hope real. This is only the beginning. The Ambiguities of At-Home Genetic Tests As genetic testing has become more accessible, people are using at-home tests to determine whether they harbor a genetic mutation that they may pass on to offspring or that increases their risk of developing a disease. However, the tests have limitations, and their results can be difficult to determine without the assistance of a clinician or genetic counselor. On NPR’s “Morning Edition,” geneticists and representatives from genetic-testing companies spoke about the pros and cons of these tests. “Individuals should be evaluated by medical professionals who are not conflicted, meaning they do not somehow work for a [genetic- testing] company. Doctors who are contracted by companies are going to say, ‘Do the test’ no matter what, even if the test may not be indicated.” —Louanne Hudgins, MD, president of the American College of Medical Genetics and Genomics Follow ASH and ASH Clinical News on: @ASH_Hematology, @BloodJournal, @BloodAdvances, and @ASHClinicalNews Facebook.com/AmericanSocietyofHematology “This health-related testing is probably the next big step in using genomic information in our lives. … I’m really hoping that the security practices associated with genetic information are quite strong. The companies say they’re strong. Time will tell if that’s true.” —Robert Cook-Deegan, MD, a health-policy researcher the Sanford School of Public Policy at Duke University School of Medicine “It’s an unfortunate development that will likely cause considerable mischief. What people deserve is well-thought-out information. The only people who will really benefit are the investors in these companies that market these incomplete and misleading tests.” —James Evans, MD, PhD, a professor of genetics and medicine at the University of North Carolina, Chapel Hill “The majority of doctors have had maybe one class in genetics. I think it’s much more important to have someone who has a background in genetics than just simply have someone who you can physically meet with.” —Othman Laraki, CEO of Color Genomics, a genetic testing company @ASH_Hematology 64 ASH Clinical News November 2018