On WUWM 89.7 FM Milwaukee Public Radio, M.S. in Bioethics program director Robert Klitzman spoke about ethical concerns with regard to genome sequencing.
Klitzman researched and wrote about these issues in his book Am I My Genes?: Confronting Fate and Family Secrets in the Age of Genetic Testing, which was published in 2012.
What makes genome sequencing particularly fraught? "Genetic tests are different because they say something permanent about you," he said. "Also, if I have a mutation, the odds are that someone else in my family has a mutation."
However, the dangers of mapping one's genes may impact not only one’s personal life but one’s professional life as well. "It is potentially the basis of discrimination," said Klitzman. He offered a hypothetical story that illustrated these subtle iniquities: "A woman in her workplace [who is eligible for a potential promotion] may tell a coworker, 'I just found out I have that breast cancer mutation.'" Colleagues start speaking with her in the hallway about the state of her health, and ultimately she gets passed over for a promotion. "She thinks [her lack of career advancement] was because of the fact that she had this mutation for breast cancer, and they wanted someone whom they thought would be there longer – even though having the gene does not mean you'll get the disease. So there's that kind of subtle discrimination. She wasn't fired, but she wasn't promoted either. These are concerns."
Patients like this one are not alone. Whereas twelve years ago DNA sequencing cost several hundred million dollars, the same procedure costs less than one thousand dollars today. As a result, Klitzman said, "More and more people are having their whole genome sequenced" – and forcing families, employers, insurers, and policymakers to grapple with new ethical questions.
Those who choose to map their DNA will have to deal with the ramifications of their genetic information for the rest of their lives. "People's whole genomes, the three billion chemical letters that make each of us, will be on their records somewhere," said Klitzman. "With electronic medical records, that information will follow us around and be with us for good or bad."
Listen to the interview with Dr. Klitzman in its entirety on WUWM's website.