Ethical Challenges of Gene Testing Explored with Cooper Medical Students

Andrew Kitchenman | March 6, 2013 | Health Care
Arthur Caplan, renowned medical ethicist, sees changed landscape for new doctors

Arthur Caplan, director of NYU Langone Medical Center’s medical ethics division.
While genetic testing is presenting new challenges and opportunities for doctors and patients, the most appropriate response in many cases is still the simplest one – focusing on traditional means of improving health.

That was one of the messages delivered yesterday by Arthur Caplan, a leading medical ethicist who spoke to the first class of students at Rowan University’s Cooper Medical School in Camden.

Genetic testing is at the leading edge of “personalized medicine,” in which doctors can tailor treatment based on patients’ genes or other unique characteristics, said Caplan, director of NYU Langone Medical Center’s medical ethics division.

Caplan said genetic research offers some of the most promising opportunities in medicine, including pharmacogenomics – technology used to determine which medications will be most effective based on a patient’s genes.

He added that doctors, before prescribing certain drugs to treat depression of other conditions, might be able to learn whether patients’ genes prevent them from benefiting from the medications.

“It’s having particular information on your genes, your hereditary makeup, that allows you to start to not do medicine as one-size-fits-all,” Caplan said.

But Caplan warned against indiscriminate genetic testing, which he said raises a series of ethical issues without offering much in the way of useful medical knowledge. He said using genetic testing to address the rising challenge of a disease like diabetes is not nearly as important as taking conventional steps like improving diet to prevent or manage the condition.

Many commercial ventures are seeking to cash in on a misplaced belief that genetic knowledge in some areas is more advanced than it is. For example, some companies advertise that their gene tests can indicate what a child’s athletic talents are – something that isn’t possible now.

Caplan said that, within a decade, all pregnant women will be offered genetic tests for their fetuses. He predicted that this will become the next major ethical battleground.

“Let’s say I go in with a happy couple, and I get this test result,” he told the medical students. “It says your fetus is at a 30 percent higher risk than average for breast cancer; your fetus is at a 30-percent higher risk than average for being boring; your fetus is at a 50-percent risk than average for being gay; your fetus is likely to be autistic, ranging from Asperger all the way over to institutionalized. So what are parents going to do with this, and who’s going to counsel them?”

Such testing could be useful in the early detection of conditions like Huntington’s disease, but, if used unwisely, it could lead opponents of abortion to see all genetic testing as unethical, Caplan added.

Some people have been overly optimistic about being to learn about their own genetic risk for certain diseases, he said.

He cited the example of a woman who wanted a test to see if she had an elevated risk of breast cancer even though she didn’t have a family history that indicated the need for a test.

Caplan then delivered his punch line: The woman was a chronic smoker who wasn’t taking steps to reduce the much-higher cancer risk from smoking.

He questioned the benefits of learning of slightly elevated risks – for example, knowing that a person has a 10-percent increased risk of Alzheimer’s.

“What are you going to do? What you’re going to do is freak yourself out because every time you can’t remember where the car keys are, you’re going to say, ‘That’s it, I knew it,’ ” Caplan said.

Caplan suggested a ban on the sale of gene tests directly over the counter to the public, since many people are ill-equipped to interpret the results. In addition, he said, there is no scientific basis for conducting the tests unless the patient’s family history indicates a risk for a disease.

Caplan has literally been in the middle of discussions of the human genome – the complete set of a person’s genetic information — since serving as an intermediary between public and private competitors to map the genome. While scientists have gained a good understanding of what genes people have, they know much less about how those genes interact and are expressed.

Cooper student Sara Zaidi of Closter said the lecture was well-timed, building on what students have been learning in a class on the foundations of medical practice.

She said that while much attention is being focused on genetic testing, Caplan’s lecture reinforced the importance of building traditional medical knowledge.

“It’s like the shiny new thing that everyone wants to do, but at the same time, it’s important to remember that time-tested notions of eating well, taking care of your environment, are important too,” Zaidi said. “It’s a bigger theme for us – remembering the old, but anticipating, accepting and learning to manage the new.”

Caplan, who has written 25 books on medical ethics, noted in an interview before the lecture that the Cooper students will deal with a very different set of ethical challenges compared to what doctors faced 30 years ago. An aging population is bringing new attention to the challenges in managing the process of dying, as well as widening the range of chronic illnesses that elderly patients have, including Alzheimer’s disease.

“Thirty years ago, that group was tiny and not growing,” he said.

In addition, while young doctors of 30 years ago were most excited about the medical miracles from new technology, doctors now are more aware of the cost of treatment and must be careful not to order unnecessary procedures, Caplan said.

“Now, we’re in an age where there is a concern that the cost has just spiraled out of control,” he said.

Finally, the infusion of more female doctors has put a new emphasis on balancing doctors’ personal and private lives, he said.

Dr. John McGeehan, Cooper associate dean for student affairs and admissions, said Caplan’s lecture built on the school’s focus on the social impact of medicine.

Caplan’s lecture was the first in an annual series on medical ethics endowed by Edwin Berkowitz, a Philadelphia philanthropist.