Genomic Messages: How the Evolving Science of Genetics Affects Our Health, Families, and Future - George Annas, Sherman Elias (2015)
Genomics has captured the attention of presidents and physicians, of science enthusiasts and health-conscious Americans. Genomic Messages is about what your genome, as read and interpreted by a skilled geneticist, can tell you about your health and your family’s health, today and in the near future. Genomics will change how we think about ourselves and our fellow humans, and is powerful enough that it could transform American medicine in the coming decades. Because of its transformational potential, it is critical that the evolving science of genomics is introduced into medical care in a way that makes the health system better and more responsive to patients, improves communication and the physician-patient relationship, improves overall health, and contains cost, all the while avoiding the past pitfalls of the old genetics: eugenics, stigmatization, and discrimination. That’s a big order!
A genomics that improves our medical care and our lives is only possible if we as citizens, consumers, and patients all critically engage with the science of genomics. Critical engagement is possible because genomics can and should be made accessible to non-specialists and the “lay public.” It is also a good time for public engagement because genomics has so far been actively introduced into clinical medicine primarily in two areas: prenatal screening and cancer research. Cancer research is also at the core of the genomic medicine initiative which President Obama announced in his 2015 State of the Union address, relabeling personalized medicine, “precision medicine.” As the president later put it, jump-starting genomic research with new federal funding is one of his few budget proposals that has strong bipartisan support. A major component of the president’s new genomic initiative is the planned construction of a massive DNA data bank with a million Americans sharing their personal, medical, and genomic information. This data bank can only be built and used, the president underscored, if the privacy of the participants can be credibly protected. Four of the ten chapters of this book specifically address each of these areas: precision (genomic) medicine, prenatal screening, cancer treatment, and genomic privacy. The other six are interconnected: the nature of genomic information, nature and nurture, pharmacogenomics, reprogenomics, children, and “genomics future.” One of the themes of this book is that the coming flood of genomic information is likely to make at least some of your medical treatment more “precise” and “personalized,” but this flood of genomic information will also bring you and your physician new levels of uncertainty. The cliché is true: we do not know the future, and even with genomics we can no more predict our future health with certainty than we can predict the weather, or even the next terrorist attack.
We are a health lawyer-bioethicist (George) and an obstetrician-gynecologist-geneticist (Sherman) team who have worked together on the clinical aspects of genomics for more than three decades, during which we have published academic books and articles, participated in national and international clinical and legal programs, and worked together on ethics panels. Our working partnership is unusual. Physicians routinely see lawyers as predators, and themselves as their prey. On the contrary, our work together has reinforced our view that cooperation between medicine and law, and genomics and society, is an essential ingredient for progress. Only a genomic medicine that accounts for the values and concerns of the public and patients, is likely to produce useful, accessible, and affordable innovations that can improve your life and health. Genomic Messages contains many stories of real patients. These stories are from Sherman’s own patients (with identities masked), cases published in the medical literature, and celebrity patients who have made their own stories public.
When we began Genomic Messages, Sherman had no reason to even suspect that he might not live to see it published. But shortly after the manuscript was completed, Sherman died. His ideas, of course, live on in this book, and in the lives of his family, colleagues, and the patients he cared for. George dedicates Genomic Messages to Sherman; but Sherman and George had agreed to dedicate this book to the future: to our grandchildren.