Actress Angelina Jolie announced yesterday that she’s had a preventive double mastectomy after learning that she carries a genetic mutation that puts her at high risk for developing breast cancer.
That announcement has, for many, rekindled a dilemma about how much information we want to know about our genome, and what do with that information once it’s in hand.
Milwaukee researchers are at the the forefront of work being done on human genome sequencing. Doctors here in Milwaukee, and at the Medical College of Wisconsin in particular, were the first to use genome sequencing in diagnosing and treating a young patient.
But with these rapid technological advances come many ethical questions. And a recent addition to the faculty at the Medical College of Wisconsin is trying to keep the school at the forefront of bioethics work in the genomics field. Dr. Kimberly Strong is an assistant professor of bioethics at the Medical College. She comes to Milwaukee from bioethics work in Australia.
Strong says genetic sequencing will become more common as doctors use it to provide diagnoses and also to learn how pharmaceutical drugs interact with different genetics.
"It isn't some sort of rare or unusual treatment or unusual test that lots of people might not have any interaction with at all," Strong says. "This is something that's personal for everyone - so I think that makes it, in itself, a very interesting thing to engage with."
But like other medical advances, Strong says ethical questions around genome sequencing lag behind the science, making this a pivotal point for bioethics.
"There's always a bit of a lag in this, but people have been thinking about these things, there are a lot of similar questions that are being posed that were posed back when we were doing genetic testing in general for single gene disorders," she says. "In this case it's the amount of information and the fact that we're looking at things and we may find things that we weren't expecting because we can't possibly know all the things we might find in a person's genome."
Strong says it's important to work out some of these ethical questions now, so that people's fears don't serve as an inhibiting factor and prevent research from taking place - as has happened with stem cell research. That can be avoided by engaging with doctors, patients and the public early on, she says.
Strong says there are some very reasonable questions to ask yourself as the possibility of more routine genome sequencing becomes a reality - we offer three here:
1. How do we protect patient privacy?
The key issue, in Dr. Strong's opinion, is privacy. With genome sequencing, so much information is collected that individuals are easily identified.
"It's as individual as a fingerprint, and in some ways maybe more," she says.
Because of the individualized nature of the information collected, Strong says we need to take extra precautions to make sure that someone can't be identified if they've participated in research. While there are protections from this information being shared with health insurance companies, the issue becomes more problematic when a patient applies to get long-term care insurance or life insurance.
2. What do you want to know/don't want to know?
Strong says it's important to remember that we can't know what you could find out about yourself in genome sequencing.
"You want to really assess what your hopes are, what do you hope to achieve by, what do you want to learn from this information, and then the things that might concern you could be around what things you wouldn't want to know and perhaps (you) want to put some limits on the information that you're informed about," she says.
3. Who else finds out?
Your genes aren't just your own, which is why Strong says we should consider what impact this information could have on other family members.
"That's another theme in genetics, that it isn't just about the individual, but it has potential implications for anyone who's genetically related to that person," she says.