Precision medicine: 'We want to make sure people feel respected,' clinical ethicist says

While precision medicine continues picking up momentum it’s going to change many aspects of healthcare, notably shared decision making in the doctor-patient relationship, confidentiality and data privacy.

Managing those is going to require a human touch. If physicians and caregivers just focus on genetics and genomics without taking into account who the patients are as people to better understand their activity and behavior then they will be missing a big part of what drives an individual’s health.

“We want to make sure that precision medicine continues to be human medicine – person-centered – as in treating the whole person,” said Paul Ford, a clinical ethicist and Director of the Center for Bioethics at the Cleveland Clinic Foundation. “We want to make sure people feel respected. In some ways, making things personalized – tailors it, makes them feel less like a whole mass.”

That might sound simple enough, but it’s not, because humans are not always perfect at making decisions.

Ford, who describes his work as helping people make decisions they won’t regret later, said that most of us need guidance when picking healthcare options, particularly for gauging probabilities and thinking rationally.

He recounted how people reacted after the Sept. 11 attacks on the Twin in New York City in 2001 to illustrate the point. Over the next two years, so many people chose not to fly, but to drive instead that traffic fatalities “showed an incredible spike,” Ford said. “The safe thing for you to do if you’re traveling is to get on a plane. It’s pretty safe if you look at the numbers. Yet so many people fear flying more than driving.”

Ford called this non-rational, noting that it is normal, but following our instincts can also be wrong.

“As we think about precision medicine for an individual, we often are talking about knowing information about a group,” Ford added. “Your genetics tell me both something about you and tell me something about your family, and about your extended family.”

"If we don’t characterize data well, it can have serious public health and financial issues"
Paul Ford, Cleveland Clinic Foundation

In applying precision medicine, in fact, Ford advocated for gathering a good history of behavior and activity to including that in clinical decision making as having a solid history of the patient includes more than just the facts residing in an EHR or medical chart.

“A history is actually a story that enlightens you about behavior, attitudes, goals, that isn’t captured through the EMR,” Ford said.

As is the case when collecting any kind of data, building that patient history also creates the need for safeguarding it, including HIPAA-covered protected health information and personally identifiable information.

Confidentiality and privacy -- classic issues in ethics -- are entirely different in today’s world with growing mountains of genomics and genetic data than they have been thus far -- and there is great power to make predictions in that information as well as pitfalls to avoid before it’s too late.

“If we don’t characterize data well, it can have serious public health and financial issues,” Ford said. “We have to continue to apply new technology and push it forward.”

Ford will be speaking at the HIMSS Precision Medicine Summit, May 17, in Washington, D.C.