Wednesday, July 11, 2012

A Very Public Conversation

As regular readers of this blog know, I’ve been in pursuit of a master’s degree in public administration (MPA) one course at a time for nearly six years.  In less than a week, I’ll start a summer course -- the penultimate one of my studies and in the fall I’ll take the final course, in which I’ll research and write my thesis on public policy issues related to the use and possible misuse of genetic information.

I’ve actually been researching this topic for quite some time--or at least collecting articles to read, thanks to a Google alert I set up for “Myriad Genetics,” which is the company that holds the patents--and does all the genetic testing--on the two BRCA genes that scientists have discovered thus far: BRCA1 and BRCA2.  (As regular readers of this blog also know, I’m a carrier of a BRCA2 genetic mutation that significantly increases my lifetime risk of both breast and ovarian cancer, and in the last 18 months I’ve had all the prophylactic surgeries, including micro-surgical breast reconstruction using my own abdominal tissue.)

Several years ago, the ACLU and a long list of other plaintiffs sued Myriad Genetics claiming that, among other things, genetic material is a “product of nature” and therefore cannot be patented. Myriad’s refusal to license its patents not only stifles important scientific research on these genes, but also makes the cost of testing for BRCA mutations exceedingly expensive and, in some cases, cost prohibitive, particularly for individuals without health insurance and those whose insurance won’t cover the test. The case currently is making its way through the court system and very possibly will end up being decided by the Supreme Court.

Perhaps my best research to date, though, has come from my latest read: written by Rebecca Skloot. Painstakingly researched over the span of a decade, the book tells the story of Henrietta Lacks, a poor, uneducated African-American woman in Baltimore who, in 1951 at the age of 31 succumbed to an extremely virulent form of cervical cancer. Unbeknownst to Henrietta or her family (including her husband, five young children and a slew of extended relatives), a sample of her cancer cells was successfully grown in a laboratory by Johns Hopkins scientists, a feat that had never been accomplished before. Because of the “immortal” characteristic of HeLa (an abbreviation of Henrietta Lacks) cells, they grew unlike others and have been used in the decades since in an astonishingly wide array  of scientific and pharmaceutical experiments.  Some of this research has led to the development of vaccines and medications, as well as to an enhanced understanding of cancer and other diseases--all unbeknownst to the Lacks family.
Although Henrietta lived and died before we as a society ever grappled seriously with the exceedingly tough public policy questions surrounding informed consent, genetic information disclosure or the resulting use and possible misuse of the data, these topics most certainly deserve our attention in today's world. Indeed, as Skloot writes in the book’s afterword, “Ellen Wright Clayton, a physician and lawyer who is director of the Center for Biomedical Ethics and Society at Vanderbilt University, says there needs to be a ‘very public conversation’ about all of this.”

This fall I look forward to researching and writing extensively about these issues and, if I’m lucky, to promoting and participating in the very public conversation they deserve.