Would there be interest in an interview with human genetics law expert Jorge Contreras? He is the author of the newly released, THE GENOME DEFENSE: Inside the Epic Legal Battle to Determine Who Owns Your DNA (Algonquin Books: October 26, 2021). Contreras teaches intellectual property, science policy, and genetics law at the University of Utah. He received his law degree from Harvard and has served on high-level government advisory committees and testified before Congress on patent law matters.
It was a groundbreaking court case that sparked public furor and pitted the ACLU against a biotech giant. On the line were not only the fates of women with breast and ovarian cancer, but also a fundamental legal question: Can a corporation own the DNA that exists inside every person on the planet? In other words, who owns our genes? The suit filed by civil rights attorney Chris Hansen and his passionate ACLU team would have profound and lasting implications for the law, for science, for business, for healthcare—for humanity in general, and especially for the lives of individual women who desperately needed testing to find out if they and their daughters were at risk for cancer.
In his riveting new book, THE GENOME DEFENSE: Inside the Epic Legal Battle to Determine Who Owns Your DNA (Algonquin Books: October 26, 2021), Jorge L. Contreras, one of the nation’s foremost authorities on human genetics law, takes a deep dive into the case, recreating the gripping courtroom drama that unfolded and illuminating the many legal, ethical, and moral layers of the controversy, from the labs and boardrooms of biotech corporations to the protests against government regulation to the lives of the ordinary citizens at risk for cancer who stood the most to lose—or gain—from the outcome.
I would love to get you a copy of THE GENOME DEFENSE and schedule an interview with Jorge Contreras. If there is interest, please respond with a preferred date and time and a mailing address for the hard copy of the book.
In Association for Molecular Pathology (AMP) v. Myriad Genetics, the ACLU filed its first-ever patent suit. It sought to invalidate several of the Utah-based biotech’s patents covering two human genes known as BRCA1 and BRCA2. Myriad had used the genes to build a lucrative business, charging exorbitant fees to test women for genetic variants that pointed to a dramatically increased risk of breast or ovarian cancer. There has been a longstanding unease in the scientific community over patenting complete human genes, and many regarded Myriad’s patents and the business strategies it used to exploit them with varying degrees of discomfort, shock, and outrage.
Contreras devoted years of work to this far-reaching civil rights case that pitted corporate greed and government overreach against individual rights, culminating in THE GENOME DEFENSE. Over a period of seven years, he interviewed hundreds of people involved in all aspects of AMP v. Myriad: lawyers, judges, patients, scientists, doctors, genetic counselors, policy makers, and academics, and he brilliantly weaves their intertwined stories to show how they intersected at a unique point in history.
As Contreras says, “This is about much more than one company, two genes, or seven patents; it is about how the law struggles to keep pace with scientific advances, and how it can be moved in one direction or another by those who seize the opportunity.”
