When genetic testing raises ethical posers
by Kathryn Doyle,
2016-02-04 05:10:00.0
WHEN people undergo genetic testing to find out whether they’re at risk for a specific disease, doctors often wonder how much information to give them. What if the genetic testing results show a risk for a disease the patient hadn’t been wondering about?
Geneticists are "grappling with what to do with all the information that could be disclosed, but wasn’t why the study was ordered in the first place", says Kurt Christensen of Brigham and Women’s Hospital in Boston.
Although in theory giving people more risk information than they were expecting might increase anxiety or depression, that didn’t turn out to be the case in a study Christensen led recently.
He and his colleagues studied volunteers being tested to see if they were genetically at risk for Alzheimer’s disease. It turned out they weren’t more distressed when they received additional results about their risk for coronary artery disease.
In some cases, those who received extra information were actually less distressed one year later.
"It was the opposite of what we were expecting," says Christensen.
That might be because patients can do little about their risk for Alzheimer’s disease, but lifestyle changes can help prevent future coronary artery disease, the authors wrote in the Annals of Internal Medicine.
These results might help researchers and doctors decide how much information to give patients based on genetic testing results, he says.
The researchers included 257 adults without symptoms, more than half of whom had a close relative with Alzheimer’s, to be tested for a variant of the apolipoprotein E gene, which has a strong association with Alzheimer’s disease risk.
All participants received information about their apolipoprotein E genotype, cumulative lifetime risk of Alzheimer’s — which ranged from 6% to 73% — and risk up to the age of 85.
Half of the group was also told that the same gene variant that increases Alzheimer’s risk may also increase coronary artery disease risk, and that this risk can be reduced by quitting smoking, having a healthy diet, losing weight, and treating high cholesterol.
The researchers assessed a subject’s anxiety, depression, distress and health behaviour changes such as diet and exercise activities at six weeks, six months and 12 months after they received the results.
At the one-year point, anxiety and depression scores were similar in both groups. Among those who were carriers of the high-risk apolipoprotein E allele (a variant form of a gene), those who were also told about their coronary artery disease risk had lower distress levels and more healthy behaviour changes than those who received only Alzheimer’s information.
In the past, experts have been concerned about how much genetic information to share with patients who are otherwise healthy, based on the potential for misunderstanding or making serious health choices based on their genes, says Dr Robert Green of Brigham and Women’s Hospital and Harvard Medical School in Boston. "There’s an inaccurate stereotype that DNA is destiny," he says.
Genetic sequencing, which used to cost $3bn, now costs about $1,000, he says.
"People who choose to get (Alzheimer’s risk) information actually do very well, even though there’s no treatment or prevention. But if you start off wanting to know Alzheimer’s risk information, and get surprised with information you completely didn’t expect, how will you react?
"This mimics the way a lot of genetic testing is going," Green says. "You might get tested for a heart problem and might find out you have a risk for cancer.
"Is it ethical to surprise people with that?"
It would be risky to generalise the results of this study to every kind of genetic risk, he says.
"If we’re talking about setting up approaches for the general population, I think emphasising the results we are confident about and that we can do something about should (be) put at the top of the list," says Dr Michael Murray of the Geisinger Health System in Forty Fort, Pennsylvania.
Most people would choose to learn about a breast cancer risk, says Dr Murray, who wrote an editorial accompanying the new results. A healthy person who is motivated and has the resources may still want to know their genetic risk for Alzheimer’s, and should be able to find out, but until a treatment or way to prevent the disease is developed, it’s not a test that should be done for the general population, Dr Murray says.
Reuters
The outcome of tests on a group of volunteers might help researchers and doctors decide how much information to give patients based on genetic-testing results. Picture: ISTOCK
WHEN people undergo genetic testing to find out whether they’re at risk for a specific disease, doctors often wonder how much information to give them. What if the genetic testing results show a risk for a disease the patient hadn’t been wondering about?
Geneticists are "grappling with what to do with all the information that could be disclosed, but wasn’t why the study was ordered in the first place", says Kurt Christensen of Brigham and Women’s Hospital in Boston.
Although in theory giving people more risk information than they were expecting might increase anxiety or depression, that didn’t turn out to be the case in a study Christensen led recently.
He and his colleagues studied volunteers being tested to see if they were genetically at risk for Alzheimer’s disease. It turned out they weren’t more distressed when they received additional results about their risk for coronary artery disease.
In some cases, those who received extra information were actually less distressed one year later.
"It was the opposite of what we were expecting," says Christensen.
That might be because patients can do little about their risk for Alzheimer’s disease, but lifestyle changes can help prevent future coronary artery disease, the authors wrote in the Annals of Internal Medicine.
These results might help researchers and doctors decide how much information to give patients based on genetic testing results, he says.
The researchers included 257 adults without symptoms, more than half of whom had a close relative with Alzheimer’s, to be tested for a variant of the apolipoprotein E gene, which has a strong association with Alzheimer’s disease risk.
All participants received information about their apolipoprotein E genotype, cumulative lifetime risk of Alzheimer’s — which ranged from 6% to 73% — and risk up to the age of 85.
Half of the group was also told that the same gene variant that increases Alzheimer’s risk may also increase coronary artery disease risk, and that this risk can be reduced by quitting smoking, having a healthy diet, losing weight, and treating high cholesterol.
The researchers assessed a subject’s anxiety, depression, distress and health behaviour changes such as diet and exercise activities at six weeks, six months and 12 months after they received the results.
At the one-year point, anxiety and depression scores were similar in both groups. Among those who were carriers of the high-risk apolipoprotein E allele (a variant form of a gene), those who were also told about their coronary artery disease risk had lower distress levels and more healthy behaviour changes than those who received only Alzheimer’s information.
In the past, experts have been concerned about how much genetic information to share with patients who are otherwise healthy, based on the potential for misunderstanding or making serious health choices based on their genes, says Dr Robert Green of Brigham and Women’s Hospital and Harvard Medical School in Boston. "There’s an inaccurate stereotype that DNA is destiny," he says.
Genetic sequencing, which used to cost $3bn, now costs about $1,000, he says.
"People who choose to get (Alzheimer’s risk) information actually do very well, even though there’s no treatment or prevention. But if you start off wanting to know Alzheimer’s risk information, and get surprised with information you completely didn’t expect, how will you react?
"This mimics the way a lot of genetic testing is going," Green says. "You might get tested for a heart problem and might find out you have a risk for cancer.
"Is it ethical to surprise people with that?"
It would be risky to generalise the results of this study to every kind of genetic risk, he says.
"If we’re talking about setting up approaches for the general population, I think emphasising the results we are confident about and that we can do something about should (be) put at the top of the list," says Dr Michael Murray of the Geisinger Health System in Forty Fort, Pennsylvania.
Most people would choose to learn about a breast cancer risk, says Dr Murray, who wrote an editorial accompanying the new results. A healthy person who is motivated and has the resources may still want to know their genetic risk for Alzheimer’s, and should be able to find out, but until a treatment or way to prevent the disease is developed, it’s not a test that should be done for the general population, Dr Murray says.
Reuters
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