Over the past two years as the chief data scientist for the US, I’ve had the opportunity to look over the horizon and see what’s coming in advancements to medicine. The costs of genetic testing continues to drop and is increasingly being used to address diseases like cancer. We also now have a wide array of new sensors to understand the impact of our environments both around us (such as air quality) and inside us (such as our microbiome). These combined with advancements of data science, machine learning, and artificial intelligence have laid the foundation to revolutionize how we treat disease.
But there’s a catch—and it’s called preexisting conditions. Donald Trump’s American Health Care Act (AHCA) will force patients to disclose preexisting conditions, which reintroduces a public fear of your genomic data being used against you—but this data is vital for scientists to collect if we want to continue surging forward with medical research. If it goes forward, Trumpcare will derail this endeavor in three ways.
1. America will miss out on the era of genomic-based medicine
When we look at the next great horizon of medicine, it’s going to require the responsible collection of large amounts of data. With this, we will be able to develop truly customized medical treatments for each patient. This idea is the foundation of the Precision Medicine Initiative, which I was fortunate to help lead at the White House. Being able to safely and responsibly bring together large volumes of data such as a patient’s DNA, environment, or health history offers an unparalleled view into how disease manifests. In fact, when we were working on the Cancer Moonshot, it became very clear that the primary route to winning the war on cancer is to bring together fragmented data sets with modern data science and AI. With these elements, doctors can utilize a more complete picture of a patient’s health to provide better care.
We can’t enter the genomic revolution if there is even a remote threat of our genetic information being used against us. Remember that time when you applied for health insurance and had to fill in all of your preexisting conditions? It was not only painful to be reminded of what you have endured, but you also may have felt threated that your data would be used against you.
But at the genetic level, every one of us has a preexisting condition. Our genes are preexisting conditions waiting to be triggered, some good, some bad. This is what makes us unique; it’s what makes us human.
But we, as a country, can’t enter the genomic revolution if there is even a remote threat of our genetic or genomic information being used against us (such as the increasing legal questions regarding wearable data and your employer). There are some protections such as the Genetic Information Nondiscrimination Act (GINA), but that was written in 2008, and given the pace of technological change, we need to see an aggressive update.
2. Science’s pace will slow down
It’s one thing to be able to have great advancements in data science, machine learning, and AI—but, if you don’t have the data, it really doesn’t matter. That’s why the Precision Medicine Initiative is so unique and the National Institutes of Medicine has developed the All of Us Research Program. It’s designed to responsibly and securely collect data from at least 1 million Americans to build the greatest biological dataset ever put together. However, programs like it all depend on people being willing to donate their data without fear of it being used against them.
When we were developing the Precision Medicine Initiative and meeting with Americans across the country, a key concern was ensuring that their data couldn’t be used against them or their family. (As this is genetic information, if you share a biological basis, you have overlap in the data.) If there is any threat of this data being used in a way that it contrary to research, my deep fear is that people won’t be willing to donate their data. And there are too many people who have diseases that need us to help by donating their data.
It’s not just our country’s race to end disease—many other countries are racing to develop their own precision medicine programs. China is aiming to put in $9.2 billion (nearly 10 times the US investment) to recruit 100 million individuals to their program. The prize isn’t only to massively identify disease but to also secure the intellectual property for the next set of medical breakthroughs that could exceed $1 trillion.
3. There will be less organ donors
We often think of organ donation as that box we can check when we get our driver’s license with the idea being that, in case we’re killed, we could help another person. The facts are stunning: Today alone, 22 people will die waiting in line for a transplant, and just one organ donor can save eight lives and change the lives of more than 50 people.
Here’s the thing that we don’t talk about: Many donors are living donors. Maybe they donated a kidney, part of a liver, a lung, part of the pancreas, or even part of an intestine. Nearly 6,000 living donations take place every year. According to organdonor.gov, that’s four out of every 10 donations. These people are heroes: They have saved a life, and many times, they saved a life of someone they didn’t know.
Let’s look at kidneys, for example. There are nearly 500,000 people in the US undergoing dialysis treatment who would benefit from kidney donation. (Did you know that dialysis is covered by law for those that need it? And it takes about 1% of the Federal Budget!) What happens if you or a loved one needs a new kidney? First you go on dialysis and look for a match with a potential donor. If you don’t find a match in your network, you go on the waiting list and hope there is a match in time.
Another alternative that has been enabled through data and altruism is creating chains of donors. Let’s say my brother needs a kidney and I’m not a match—but I’m still willing to donate to another person to establish a trade of kidneys. This way we increase the chances of finding a donor. Thanks to better data and algorithms, we can make a chain of donations where everyone gets the right kidney at the right time. This model is so powerful that one of the longest chains was 68 people—34 donors and 34 recipients—using 26 hospitals.
Thanks to Obama’s Affordable Care Act (ACA), none of these courageous donors could ever be discriminated against. Unfortunately, if we let preexisting conditions become a vehicle to deny coverage via Trumpcare, every one of these donors will now have to list that they have a preexisting condition. If this happens, the benefits from these fragile organ-donation chains could collapse due to the fear of being discriminated against.
The future of healthcare and big data
The US needs to look at both the short game and that long game. In the short term, we know that the ACA needs iteration. Healthcare is complex and there is no fast fix, only steady and regular iteration to improve the quality of care for all Americans.
Trump’s AHCA is a massive step backwards. It cuts coverage for 23 million people, raises premiums by 20%, limits the care under Medicaid, and effectively eliminates Medicaid expansion. It also disproportionately targets healthcare services for women, eliminating the requirement that plans cover maternity and newborn care or access to preventive and contraceptive care, and it also defunds Planned Parenthood. Even sexual assault and rape could be considered as a preexisting conditions and used to deny coverage going forward.
So let’s also keep the long game in mind: the things we need from medicine and science for our kids and our kids’ kids. Innovation is hard, and we’re lucky that those before us laid down the foundations for us to enable the incredible medical advancements we see today. The AHCA will cripple our nation’s efforts to enter the era of genomic medicine and the second order effects to ending cancer and addressing problems like organ donation.