The ability to map the human genome promises medicinal benefits while posing ethical questions.
Advances in genome scanning technology allow doctors to more efficiently process an individual’s whole DNA sequence, but raise concerns about the ethics of the practice. When running DNA tests, doctors sometimes encounter unexpected results unrelated to the original purpose of the screening, such as an individual’s genetic predisposition to a disease. Many question whether such incidental findings should be shared with the patient, said Dr. Robert Cook-Deegan, director for Genome Ethics, Law and Policy at the Duke Institute for Genome Sciences and Policy.
“People should have the right to any and all information,” said Dr. Misha Angrist, assistant professor of the practice at the IGSP. “But I’m not advocating that we force information on people. Some people don’t want to know, and we have to respect that.”
In situations of incidental findings, doctors must choose to either inform the patient of the additional results—including any uncertainties regarding treatment—or withhold that information.
Genome scanning technology has been growing more common over the past five years and the medical community has yet to determine a standard course of action for such cases.
“Do you share only what you know, the things you can understand and do something about, or do you share everything, including your uncertainty and bring the patient in as a partner to make the decision with you?” Cook-Deegan asked.
He added that doctors often discover information about a patient’s genetic conditions that they cannot interpret.
The question is more complex when the individual in question is a child rather than an adult. Knowledge of a genetic predisposition to an untreatable or unpreventable illness could color a child’s entire life, even if onset of the disease does not occur for decades, Angrist said.
“There’s some legitimate concern about not predetermining a child’s future,” Angrist said. “But at the same time, I think another argument can be made, which is if you find out that your child is going to be at risk… you can be more aggressive about screening and monitoring or get him or her into a clinical trial for asymptomatic people.”
Recent advances in the field have made it possible to glean the DNA sequence of a fetus from just a blood sample of the mother, allowing doctors to predict an unborn child’s genetic predispositions to a disease without operating on the mother, Cook-Deegan said.
“It raises the issue of if it’s right to use this technology to determine who’s born,” Cook-Deegan said.
The multifaceted nature of the subject has sparked much discussion through the medical and research communities both nationwide and here at Duke, where genome-scanning was the topic of the Bioethics Society’s October meeting.
“A lot of people are really interested in it,” said senior Trent Chiang, president of the society. “It has so many applications.”
Cook-Deegan added that the technology holds great potential for changing the future of health care, though the challenge now is figuring out how to most effectively use the information.
Some are concerned, however, about intellectual property issues that could arise from determining who has the right to the information, Angrist said. He added that all individuals should have the right to access their own genome, regardless of whether they have medical backgrounds.
“We have this view of genetic information as scary and dangerous, something you can’t look at without the help of a man in a white coat, but it’s really this cool and incredible thing,” he said.