Our genes are an essential part of the story of who we are, and will become.
What that story means, how sure we may be of its details, how much of it we want to hear and how much we may want others to know of it—these are part of the Pandora’s box of questions unleashed by the rapid advance of personal genetic technology.
The emotional consequences of genetic testing are hard to predict.
Information about deep ancestry, as well as current medical information and predictions, is increasingly available on the basis of individual genome sequencing: but it’s not always easy to predict how receiving surprising information about your heritage, your future health prospects, or other aspects of your personality and identity will strike you — or your family members.
The potential for genetic discrimination is real.
Familiar with the 1997 film Gattaca? In a dystopian future social, the publicity of genetic information and widespread use of eugenic reproductive technology leads to shocking social stratification, with everything from employment to romantic partnership shaped by one’s genetic inheritance. Even now, ethicists worry at moves made by employers and insurance companies on the basis of genetic or other medical information — and how that might play out as personal genomics continues to expand.
On February 3rd, 2015, we convened a conversation about ethics and personal genomics.
The conversation drew an audience from across the Georgetown campus and the broader DC bioethics community, coming together to celebrate a semester of student work on the topic of personal genomics and to engage in a spirited conversation with genetic experts that dives deep into its many moral complexities.
Panel: Personal Genomics
Watch the Panel
About the Panelists
Joanna Rudnick, MA
Joanna Rudnick is an Emmy-nominated documentary filmmaker living in the Bay Area. Her directorial debut In the Family told her very personal story about coming to terms with learning that she had the BRCA1 gene that greatly increases each woman’s risk for breast and ovarian cancer. Since its national broadcast on PBS in 2008, In the Family has been broadcast in at least 10 other countries around the world. The film was screened as part of the successful effort to pass the Genetic Information Nondiscrimination Act (2008). It also served as a public educational resource to raise general awareness about the dangers of the gene patenting and secrecy around sequencing results, especially for the BRCA1 and BRCA2 genetic mutation data still controlled by Myriad Genetics. Her own personal story has led Ms. Rudnick to serve as a member-advocate for the “Free the Data” movement, a grassroots coalition made up of policy makers, advocacy organizations, academic centers, individuals, and industry partners, who actively advocate and actually share their genetic information to help scientists and researchers overcome the information gap about genetic sequences. The goal being to move toward an understanding of the risks associated with genetic mutations and how and why particular genetic mutations can cause hereditary breast and ovarian cancer. Pooling data and making it available also is expected to help elucidate the consequence of other genetic variants of unknown significance.
James H. Fallon, PhD
James Fallon is a brain researcher. He is Professor Emeritus, Anatomy & Neurobiology and Professor, Psychiatry & Human Behavior at the University of California, Irvine’s School of Medicine. His research work explores the way genetic and in-utero environmental factors affect the way the human brain gets built and then seeks to understand how an individual’s particular experience and environmental exposure further shapes and changes his/her brain development. This work focuses on neurobiology, neuroanatomy, and epigenetics, “carefully orchestrated chemical reactions that activate and deactivate parts of the genome at strategic times and in specific locations on the genome” as a result of environmental factors such as stress, diet, toxins, and behaviors. Some of Dr. Fallon’s research work contributed to understanding aspects of diseases such as Alzheimer’s, Parkinson’s, and schizophrenia, and conditions such as nicotine and cocaine additions and psychopathic personality. He has also done research on the basic brain biology on topics such as the neurotransmitters dopamine and norepinephrine. He was the first to show the mass mobilization of adult stem cells in models of chronic stroke and Parkinson’s disease, and the postnatal expansion of neurons in human neocortex. His book, The Psychopath Inside: A Neuroscientist’s Personal Journey into the Dark Side of the Brain (2013), tells his personal experience but also points out that work on epigenetics and in the new field of imaging genetics may result in better understanding and better treatment of all sorts of behaviors, but it may also raise troubling ethical issues.
Spencer Wells, PhD
Spencer Wells is an Explorer-in-Residence at the National Geographic Society. He leads The Genographic Project, which is collecting and analyzing hundreds of thousands of DNA samples from people around the world in order to decipher how our ancestors populated the planet. A collaborative effort of scientists around the world, the Genographic Project will also capture a genetic snapshot of humanity before it is erased by modern-day influences. The Project combines Well’s two great passions, biology and history, and builds on his earlier work gathering DNA around the globe as featured in his award-winning book and documentary television program, The Journey of Man: A Genetic Odyssey. Wells’ landmark research findings based on early field work surveying Asia and former Soviet Republics in the late 1990s led to advances in understanding of the male Y chromosome and its role in allowing scientists to trace ancient human migration patterns. In addition to his global DNA research work, Wells also has served as director of the Population Genetics Research Group of the Wellcome Trust Centre for Human Genetics at Oxford University and as head of research for a Massachusetts-based biotechnology company.
Gallery: Personal Genomics
About the Gallery
Each year, we connect our conversation with in-depth student work on the same topic.
The twenty students enrolled in PHIL105–04: Introduction to Bioethics in Fall 2014 got a big helping of design methods alongside their bioethics instruction.
They also got an unusual opportunity: the chance to sequence their genome, for free—if they so chose—using a popular direct-to-consumer genetic testing kit.
Test results would include information about ancestry, as well as access to raw data that can be analyzed independently to glean health or medical information. (The genetic testing company in question, 23&Me, no longer offers health reports as part of its test.)
Rather than simply theorizing about the promise and perils of genetic knowledge, students were confronted with a real-life, real-stakes choice: take the test, or no?
“In philosophy, we do a lot of ‘on the one hand… on the other hand…’ kind of reasoning,” explained one of the course assistants. “But in bioethics, at a certain point all that philosophy has to hit the road, and hard choices have to be made. What I love about this class is that it was able to make some of those more abstract issues about privacy, self-knowledge, race and ethnic identity, and medical decision-making, very tangible and very real—but in a safe environment, where you had experts on hand to help guide you to a choice that each individual student felt comfortable making.”
In the end, eighteen students chose to sequence their genomes—some with caveats or restrictions—and two chose not to. You can read their reflections on those choices in this gallery.