Children and patients need better education about genomics and genetic test results so they are prepared to make decisions about testing and treatment, Reed Tuckson, MD, said during an exclusive Facebook Live chat with MedPage Today.
"How many Americans do you know who have had good courses in statistics?" said Tuckson, founder of Tuckson Health Connections, a consulting firm, and former health commissioner of the District of Columbia. "Across the board, Americans are woefully under-educated when it comes to the scientific principles that now inform modern clinical genetics, which, by the way, is now modern American medicine. This is not a little offshoot, a little thing in the corner any more ... These are super common and important decisions people are making."
And, "just as healthcare has disparities in outcomes, where people of color do less well than white Americans, even in the poorly educated American science and mathematical literacy, people of color do much worse than white Americans," he said during the chat on Tuesday. "And so we ... are facing a very real challenge. How will people be able to participate intelligently and make personally appropriate decisions that comport with their own values ... in this complex new era where they are not well prepared, and where their physicians and clinicians are not well prepared to actually hold their hand and be able to counsel them?"
To better help guide patients making these decisions, physicians will need a lot more education, Tuckson said. "Clinicians, when it comes to genetics, are not nearly well-prepared to keep up with the pace of discovery in genetic medicine. Our training in medical school, even up until very recently, does not really prepare the modern physician to really make use of this clinical information ... Clinicians need more training not only in medical school, but in residency and throughout the entire continuum of continuing medical education."
Ancillary providers like genetic counselors also will be needed, he said. "It shocks me every time I think about it -- but the number of certified genetic counselors in this country [is] 4,600. That's it ... And of that, only 3% is African American and Hispanic combined. So there is a huge need."
"But what is also needed is a much more aggressive, proactive, and vigorous science and math education program," he continued. There is some good news on that front: "When I talked with the , they have a terrific and well-meaning, well-directed initiative to train and support education [in this area] in K-12." In addition, "The National Council of Teachers of Mathematics ... they see this problem coming and they're advocating for more resources to teach the math that's needed for modern adults."
However, more efforts are needed at the state and local level, since that's where much of education funding comes from, Tuckson said. "We're still seeing fights in the local and state school boards around teaching of evolution and teaching of advanced science concepts ... I really have to ask you ... If any of this matters to you, make a call to your local school board and find out, 'How can I get more support so that our kids are not left in the lurch making difficult decisions as adults for which they are poorly prepared to make?'"
One problem still to be solved is how to better assure people that their genetic information will be kept private, he said. "One of the great paradoxes on genetics and the way genetic information is used is on the one hand, there have been some extraordinarily important criminal justice initiatives that have used DNA testing in the criminal justice system databank to be able to identify people who have been wrongly imprisoned -- unfortunately, so many of those after they've already been executed." On the other hand, there was also the California serial killer investigation in which through the use of information from a publicly available genealogical database.
"We should be aware that there are no prohibitions in the law for the judicial system and the criminal justice system to be able to have access to that information," Tuckson said. "Similarly, there are no prohibitions when you go and sign up for direct-to-consumer [genetic] tests [or] when you go to some of these genealogical websites. These things are not protected by the [constitutional] prohibitions against search and seizure. And so, many people will be very anxious about who is collecting their genetic data and what does it mean for them, but also, what does it mean for the other human beings who share their same biology?"
Another example of the controversy over genetic information disclosure "is what happened for many members of the Hispanic community -- those who are now finding themselves on the border, displaced from their parents or displaced from their children," he said. "Two of our more popular websites who are collecting ancestry information volunteered to have their resources available to try to reunite the families. The well-meaning and principled advocates for that community of people were adamant that they did not want or think it appropriate that this were to occur, because who would protect the families from unintended uses of that information?"
"So there is underlying the clinical medical world ... there is this sense that we are going to have to ultimately also deal with this sense of trust and trustworthiness," Tuckson added. "And I think what that boils down to for me as a physician, and having leadership positions in American medicine, is to call upon all of the health industry to participate vigorously, loudly, with with intensity and principled-mindness in this conversation about social justice, equity, fairness, how do we deal with the dignity of every person, and resist these attempts at polarization, stigmatization, segregation when it comes to subpopulations of America and casting aspersions upon [them]."
For the complete video of this Facebook Live chat, go to .