I just came back from the Association of Health Care Journalists annual conference in Denver, where on Saturday I moderated a panel discussion on the challenges of using genetic information for personalized medicine.
The three panelists were:
Carl Morrison, MD, DVM, Executive Director of the Center for Personalized Medicine; Clinical Chief of the Department of Pathology & Laboratory Medicine; Director of the Division of Molecular Pathology; and Director of the Pathology Resource Network at Roswell Park Cancer Institute;
Bryan R. Haugen, MD, Professor of Medicine and Pathology; Chief of the Division of Endocrinology, Metabolism & Diabetes; and Director of the Thyroid Tumor Program at the University of Colorado; and
Rebecca D. Pentz, PhD, Professor of Research Ethics at Winship Cancer Institute, Emory University School of Medicine.
The session provided an overview of what personalized medicine is, how it is being applied, its future, and ethical concerns from the viewpoints of a journalist, clinician researchers, and a research ethicist.
I started off by noting that when I was working at a comprehensive cancer center in the 1990s, the institution had one of only 100 cancer genetics counselors in the world. Providing appropriate pre- and post-counseling about the results of genetic tests was considered essential, but that component has often been relegated to the less-qualified with the increased commercialization of genetic testing.
I referred to an article I’d written for OT in 2007 regarding Myriad Genetics ill-conceived direct-to-consumer advertising campaign for BRCA1 and BRCA2 testing, and a blog post this past December on the proliferation of marketing information at the San Antonio Breast Cancer Symposium about new commercial BRCA testing; this was in light of the Supreme Court’s ruling earlier in the year that restricted the patenting of human genes, and in effect ended Myriad’s monopoly of the BRCA genetic mutation testing market.
Morrison defined (by way of Wikipedia) personal or precision medicine as a “medical model that proposed the customization of health care with medical decisions, practices, and products being tailored to the individual patients.”
He noted that personalized medicine:
- isn’t new;
- will be much different in a few years;
- is currently in the technological era of genomic sequencing; and
- the next step will be the clinical utility era.
He said that the current issues in personalized medicine involve (1) defining “actionable”; (2) designing and implementing actionable screening tests; (3) providing unambiguous information to the ordering physician; and (4) cost effectiveness.
Lung cancer is leading the way in personalized medicine, he added.
Haugen said that thyroid cancer is more common than many people think – it is now the fourth most diagnosed cancer in women and is on track to become the second most diagnosed cancer in women (after breast cancer) by the 2020s.
He said that as a clinician he was frustrated by unnecessary surgeries and led the validation of a novel molecular test that helped avoid these surgeries in certain patients with thyroid nodules.
His institution, the University of Colorado, is now developing a program to integrate biological, clinical, and behavioral data that will drive the development of more precise medicine.
Pentz said that the ethical issues involving precision medicine include hype and overselling what is possible; discrimination; incidental findings and whether or not to act on them; lack of true informed consent, and the equitable distribution of and access to targeted therapies.
Treatment based on genomic alterations are the future in cancer research, she said, adding that the preferred term by the American Society of Clinical Oncology, among others, is now “precision medicine” rather than “personalized medicine” – since the thinking is that medicine has always been individualized.
She noted that there are many barriers to precision medicine and that it is important for journalists to convey to their audiences that scientific advances are incremental, and there will always be updates, corrections, and missteps.