In 1951 Henrietta Lacks, a young black woman, was admitted to Johns Hopkins University with aggressive, terminal cervical cancer. Her physician attempted to culture her tumor cells for research; a procedure that had always failed—until cells were taken from Ms. Lacks. Her cells grew. And grew. And grew some more. The cells from Ms. Lacks became known as the HeLa cell line (HErietta LAcks), and this line is one of the most commonly used cell cultures for scientific research the world over. As an undergraduate researcher in 1979, I was given HeLa cells for a project by my lab director. The eradication of polio, our understanding of genetics, and a vaccine for HPV all come from work with HeLa. We owe a debt of gratitude to Ms. Lacks.
There’s just one thing. Ms. Lacks was never asked whether it was alright to use her tissue, her body. As discussed in Rebecca Skloot’s The Immortal Life of Henrietta Lacks, neither Ms. Lacks nor her relatives even knew about the culture for many years after her death.
Although Hopkins never made money from the cells, there are now more than 17,000 patents worldwide, many presumably making money, made possible because of HeLa-related research. After Ms. Lacks’ case became public knowledge, it spurred new rules relating to patient rights, medical consent, and organ transplant. As the saying goes, “Nothing about me without me.”
Now we’ve entered a new era. The discussion extends beyond tumors, kidneys, and livers. Patient rights are extending your bits and bytes—your data. Allow me to explain.
Privacy and security
Most are familiar with patient confidentiality and HIPAA. Hospitals have a legal obligation to keep your information secure—but medical records have intrinsic financial value. With all the personal information stored in medical records, some estimate that a person’s medical record is 10 times more valuable than their financial data.
Like organs, healthcare data has intrinsic value. An article in Lancet Digital Health posed the question: Is healthcare data the new blood, the new oil? Artificial intelligence (AI) has conceptually been available for several decades, but tech advances just over the past 3 or 4 years have made AI a true business tool. And the fuel for AI is data. Information from healthcare systems, insurers, pharmaceutical organizations, and device manufacturers could drive the next generation of cures. Just like Henriettta Lacks’ cells had no value for her family without Hopkins’ ability to culture them, your healthcare data has no value unless paired with the right technology. When your anonymized data are combined with data from millions of other patients and the right technology is applied, real value is created.
When we think about health-related discrimination, we usually think of patients being denied employment based on chronic illness. While your data cannot be used against you in other industries (for example, your car has a black box to collect data from accidents and to improve driver safety, but this information cannot be used against you), in some instances medical data has been used to deny benefits. Recently a patient was denied a CPAP device for his sleep apnea. As it turns out, the device manufacturer was sharing his health data with his insurer! Given that the device costs insurers $225 million annually, Medicare has specific rules about how often patients must it. Expect more efforts to monitor compliance. Overall, the device market (172 billion in 2013) dwarfs genetic testing (predicted to be 22 billion in 2024).
Should data be treated like blood? Similar to the Red Cross or the blood bank, a “DataCross” or databank
Blood and data share many similarities. Blood defines us, but we donate to help others in their time of need. Your (extra) blood is of no value to you. However, it is lifesaving when given to others to process and distribute. The same is true of data. Your data define you, but without outside assistance, your data are worthless. When mixed with the data of others, yours become increasingly valuable. Collectively, our data can improve care and identify future cures.
Where do we go from here?
Is healthcare a right or a social contract?
A civil society should care for its citizens—that means basic levels of food, housing, education, safety, and yes, healthcare. Although we treat healthcare as a limitless resource, it’s really not. We seem to practice what I call irrational rationing—questionable spending on things like end-of-life care for our oldest citizens while scrimping on child healthcare and other public health initiatives.
If you accept that healthcare is a limited resource and should be rationed appropriately, in the world of data, my preference would be a model in which you must give to get. For example, if you want access to a healthcare service (like a CPAP device), there could be one price if you share data, and another price if you opt out.
Currently, once anonymized, HIPAA provisions suggest you don’t own your data anymore. And while I support consent, the requirement to ask patients to approve use of their anonymized data each and every time there is a need has serious public health repercussions.
Don’t be Facebook. Transparency and choice are critical
Most hospitals, payers, and other vendors consider your data their data. However, others feel that if a patient adds value, they should participate in the profits. It’s hard to imagine how this would be done. Blockchain or other technologies could potentially record and reward for “micro” transactions, for an individual’s data, but collective data is where the true value lies.
While her legacy, her cells, have been an invaluable legacy to millions of others, Henrietta Lacks’ family feels that they are owed for their mother’s unknowing contribution. There needs to be more fluid, transparent process, one protecting patient privacy and rights, but sensitive to the benefits for society at large. As we move from tissue to even smaller units—your bytes and bits—the need for conversation and some better form of consent will grow.