$1,000 Personal Genome Coming: Are We Ready?
Study Shows Why You Might, and Might Not, Want to Know Your Genome
Ethical Issues Plague Whole-Genome Test continued...
Understanding genetic risk isn't easy. Even scientists like Quake need
counseling to put personal genetic knowledge into perspective. And right now
there are no requirements for companies that offer gene sequencing to provide
such counseling, warns Arthur Caplan, PhD, director of the Center for Bioethics
at the University of Pennsylvania.
"Amidst all the genome hype, people ignore environmental causes," Caplan
tells WebMD. "They say, 'I don't have the gene for breast cancer, but smoke
three packs of cigarettes a day and never exercise.' Not having a risk gene for
a disease is false security, and having one is not a death sentence. All this
has to be explained."
That could be a big problem. In an editorial published alongside their study
in the April 30 online issue of The Lancet, Ashley and several of his
colleagues note that the average person will discover he or she has about 100
"Even if [counseling on] that information averaged only three minutes per
disorder, this process would take more than five hours of direct patient
contact, after many hours of background research," they calculate.
And there are only about 2,500 trained genetic counselors and 1,100 clinical
geneticists in North America, all now busy with other work.
And there's another big issue: What do you tell your close relatives, who
share many of your genes?
"Finding out about your own risks leads to information about your relatives,
which you may try to tell them whether they need to know or not," Caplan says.
"If you show up at Thanksgiving screeching about the risk for Alzheimer's you
found out you have, your relatives may say, 'Hey, I didn't want to know
So who should get their genomes deciphered? Caplan says those who think they
are interested should ask themselves some serious questions:
- Do I have a history of any genetic diseases in my family?
- If I got information I could not do anything about, would I still want to
- If I get information about risk and it implicates others, how will I handle
- Are the people I'm seeking testing from reliable?
- Am I willing to change my lifestyle to reduce the risks I learn about?
And Caplan has one more piece of advice.
"If you're just looking to learn about your overall risk, instead of getting
in the car and heading over to the genetic testing facility, you may want to
jog over," he says. "And while you're jogging, think about what you really are
going to do to reduce your lifetime risk of disease, and jog back."