“Can we cure all diseases in our children’s lifetime?” The pediatrician Priscilla Chan and her husband, Mark Zuckerberg, the founder of Facebook and the fifth richest man in the world, think the answer is yes. On September 21, 2016, they went to a San Francisco auditorium to announce the donation of $3 billion to the Chan Zuckerberg Initiative, or CZI. It won’t cure all diseases, but it’s a large sum — about as much as the cost of the Human Genome Project. The CZI will support high-tech, blue-sky research using genomics, sophisticated databases, and other cutting-edge methods.
Zuckerberg set out the philosophy that will guide the CZI toward this North Star. His slide read: “engineering + social change.”
Zuckerberg explained that he believes engineering leads to social change. The social change he wants to see is better health. “That doesn’t mean that no one will ever get sick,” he said. “But it does mean that people should get sick a lot less.” The promise of CZI is that more diseases will be eradicated, new drugs will cure, treat, or manage disease, and diagnostics will help doctors identify diseases and tailor treatments to patients’ needs. Zuckerberg believes fervently that an engineering approach — smart, rational, and carried out with technology — is the way to solve social problems.
Technology has indeed permitted some of medicine’s greatest successes. Vaccines, antiseptic surgery, anesthesia, and antibiotics have probably saved more lives and reduced more suffering than all other advances in the history of medicine combined. Throw in modern pharmacology, cancer research, imaging technologies, such as X-ray, CT scans, and MRI, and genetic and genomic diagnostics, and you would seem to have a compelling case for technology as panacea.
But when you look more closely, you find that those technologies are usually a combination of happenstance, behavioral changes, low-tech solutions, and the importing of technologies from other fields into medicine. Alexander Fleming, for example, discovered penicillin by accident when he left a petri dish in the sink and left the window open before going on vacation. Ether was a party drug before it was used in surgery. Wilhem Röntgen was studying cathode rays emitted from vacuum tubes when he discovered X-rays. These technologies don’t represent an approach to social change; they are interwoven with it, in all its messiness.
When people have tried to engineer society, the results haven’t been pretty. Eugenics — often defined as “the science of human improvement through better breeding” — was grounded on a rationalist approach to social problems. Its inventor, the Englishman Francis Galton, imagined that once you explained the principles to people, the upper classes of society would have more children, while those he considered of lower quality — poor, sick, and stupid — would happily refrain from reproduction and society would improve.
In Edwardian England, eugenics was mostly aspirational. But when married to Mendelian genetics and transported to Progressive-era America, it became a vehicle for mass institutionalization, sterilization, and scientific racism. Few people realize that the infamous Nazi sterilization law of 1933 was explicitly modeled on one in California. At that time, most American states had similar laws on the books. Under their auspices, tens of thousands of people were sterilized.
How do we put the person back into personalized medicine? By balancing science and technology with humanistic principles, such as dignity, empathy, and compassion.
In the 1880s, Frederick Winslow Taylor applied scientific and engineering principles to industry. He initially hoped that workers would be happier and more productive. When “Taylorism” was widely adopted, it indeed improved efficiency, but it reduced workers to “human resources” — automata in a profit machine that benefited managers, owners, and trustees. By the 1930s, revolt against what had become heartless rationalism in the workplace helped spur the rise of labor unions. Sleek, new technology is gradually winning out against ornery, expensive humans, however. Techno-Taylorism is now infiltrating the service industries. In Silicon Valley, it’s getting hard to find an entry-level service job — behind a cash register, say, or waiting tables — because the workers don’t just feel like automata. Those jobs are increasingly filled by literal machines.
In the field of information security — with which Facebook wrestles constantly — “social engineering” has come to mean a type of scam. Phishing, baiting, and identity theft are examples. Social engineering scams use psychological manipulation based on cognitive biases in the user. The hacker pulls the puppet-strings and the naive user hands over valuable information. The only way to fight back against these scams is by education and training. We learn that when a stranger calls and says that your child is in jail, without giving specifics, and then says that you can spring him for $200, payable right away if you give him your credit card number, we should just hang up.
All of these engineering approaches to social problems share some form of dehumanization. Frequently, they are founded with the best of intentions by rationalists bent on improving the human condition. But relentless objectivity stifles empathy. It tends to make the world’s managers, employers, and caretakers forget that society is comprised of individuals with subjective needs, wants, and feelings. Engineering approaches tend to strip people of their humanity. By turning a social problem into a technical one, you turn people into cogs, engines, or data.
This risk is great with genomics. The Human Genome Project gave rise to a push for “personalized medicine” that promised to tailor treatment to the individual. The danger, though, is that the individual person becomes the individual genome. Individualized care has always been available — and it’s always been a luxury, affordable only by the wealthy. Personalized medicine is now “precision medicine.” Precision is good, but we must guard against its tendency to shift the medical gaze from the patient to the technology and those who apply it.
Don’t get me wrong: The potential benefits from precision medicine are great. But the hype exceeds the reality. It helps the wealthy first, and it fails to address the structural problems in our healthcare system and in society at large that lead to health disparities.
How do we put the person back into personalized medicine? By balancing science and technology with humanistic principles, such as dignity, empathy, and compassion. The physician Barton Childs — father of personalized genetic medicine — noted that mechanistic, rationalist approaches do have a role in medical research and patient care. But he cautioned that we must not lose sight of the art of medical practice: knowing when to treat patients as machines, and when to acknowledge their idiosyncrasies and their humanity.
In other words, Zuckerberg’s slide ought to have read: engineering + humanism = social change.
By all means, let technology advance. Do the science. Find the sequence. But do it humanely and without hubris. Let surprises come from obscure corners. Allow for spontaneity. And remember that social problems have social solutions.