Summary of Henrietta’s Story

In 1951, Henrietta Lacks, an impoverished 31-year-old African American mother of five, was treated at Johns Hopkins University and later passed away from a malignant cervical tumor. Her cancer cells were biopsied and kept in Dr. George Gey’s tissue lab where they were discovered to have “immortal” properties: Whereas normal human cells can’t survive for a long time in culture, these cancer cells, dubbed HeLa, multiplied indefinitely.

While HeLa cells were discovered by Dr. Gey, they soon moved beyond his initial work and achieved significant commercial success through Microbiological Associates’ large-scale reproduction process of HeLa cells and were eventually deployed in labs throughout the world (and even in outer space). They have been instrumental in the Human Genome Project, viral research and vaccine development (notably polio and HIV), genomic research, cancer research, and other scientific applications. The prevalent use of HeLa cells symbiotically drove innovations in technologies for tissue transport, tissue freezing, and genome sequencing.

The use of HeLa cells in medical research led to what many of us take for granted today: informed legal consent. For years, Henrietta and her family did not receive any compensation for her cells’ role in enabling so much innovation. They were not asked for consent to use the original tissue sample for medical research, and were never made aware of the related, valuable breakthroughs.

Henrietta’s personal story surfaced in an acclaimed book by Rebecca Skloot, The Immortal Life of Henrietta Lacks, which discussed difficult topics related to race, poverty, medical ethics, privacy, consent, and intellectual property. There are a number of relevant parallels to be drawn for data related to the Internet of Things.

B2B IoT Data

With the rapid expansion of Internet of Things (IoT) applications in the last decade, data has proliferated and grown exponentially. IDC estimated in late 2018 that by 2025, there will be 175 zettabytes (trillion gigabytes) of data in the world. This data represents a large potential for value creation in the form of downstream applications.

We see four similarities between Henrietta’s story and the B2B IoT data world:

1. Akin to Henrietta’s immortal cells, data itself has the potential for significant insight and value creation. However, the entity creating data may not be aware of the value as downstream use cases may not be obvious.
2. Sometimes a third party is needed to recognize the value of data and transform it into commercial products through aggregation and analytics.
3. The value is generated by new applications built upon these raw materials or data. For HeLa cells, the value was driven by the thousands of researchers that discovered medical innovations through the study of Henrietta’s cells. Similarly, value from IoT data is generated by companies that address high-value use cases.
4. Once made widely available to the medical community, Henrietta’s cells could be grown and replicated by anyone at zero marginal cost for their specific use. Similarly, data can be replicated at zero cost and end usage is difficult to monitor and control.^[1]In fact, Dr. Gey attempted to restrict the way HeLa cells were used. However, he was rebuffed by a colleague who stated “once released [HeLa] becomes general scientific property.” Immortal Life … Continue reading Modern IoT data usage raises similar questions of ownership, sharing, and consent.

One salient modern example is the data relationship between car OEMs and telematics data aggregators. Drivers produce and consent to car data being analyzed and shared with third parties. Data aggregators (e.g., Otonomo, Caruso, HERE) collect, clean, package, and sell data to enterprise customers for a variety of applications. Companies that service cars, create mapping software, and provide insurance products rely on this transformed data for their products.

As connected equipment proliferates, IoT data explodes, and solutions and ecosystems mature, we are starting to see questions arise regarding data ownership and sharing. For example in the automotive industry, data rights and use disputes are emerging between consumers and OEMs, as well as between OEMs and other industry partners. These question include:

1. Who should own car data?
2. Who should control the data and how it’s used?
3. Who should derive financial value from data?
4. What challenges are there to sharing data?
5. What enabling technologies are necessary?
6. What public policy implications are there?

Lessons from Henrietta Lacks

Approaching our understanding of IoT data through the lens of Henrietta’s story suggests three key lessons:

1. Data privacy and consent are critical. IoT sensors may collect information for a very specific use case but could also be applied to alternative uses outside of the awareness of the customer. For example, manufacturing equipment data can reveal a plant’s utilization (and therefore output and economic value) or how long operators work and when they are on break.

Frequently, B2C data sharing consent statements are buried in legalese. While corporate procurement of large scale B2B IoT solutions include more scrutiny of this language than the typical consumer’s approach to an app download, companies have varying power in negotiating data rights.

2. The bulk of the value is in applications built off of the data (and research conducted using HeLa cells). How does a company capture the value from its data once the value is created? How does a company negotiate this value capture, particularly when it’s difficult to predict the value of innovation ex-ante?

The way that Henrietta’s cells were taken and used without her or her family’s knowledge or consent is now broadly recognized to carry considerable ethical problems. This issue is compounded by the role her race, gender, and socioeconomic class played in the way that Henrietta was treated. However, and purely hypothetically, even if there was a completely transparent, ethical, and fair agreement between Johns Hopkins and Henrietta in 1951 over her cells, would her doctors have been aware of what the cells’ potential would have been? Might there have been usage restrictions on what types of research or what kinds of parties could have accessed her cell line?

3. Broad sharing and lack of ownership disputes allowed for a productive ~70-year period of innovation. Because HeLa cells were widely available, universities and research entities across the globe were able to study their unique properties and build real health solutions. HeLa cells were a valuable tool and their use was not limited by legal constraints. Henrietta’s story raises several questions for potential innovations from IoT data:

• Companies may collect and hoard IoT data without knowledge of all the end-use applications due to concerns about data sharing. What legal frameworks encourage data owners to be more open and collaborative? Should (some) data be a public good?
• How can companies maximize value creation from IoT data while also addressing some of the valid concerns on value sharing raised by the HeLa story? Dr. Gey’s tissue lab, Microbiological Associates, and the countless researchers working with HeLa cells all built real value with HeLa cells. How should companies build remuneration systems to capture value and promote data sharing while enabling downstream innovation?
• Data ownership can be a control point. For example, smart cities are investing in their own data platforms to encourage innovation and avoid vendor lock-in to a data provider. How can companies use data to attract third parties and avoid vendor lock-in?

As part of our research this upcoming year for the BCG Henderson Institute, we’re building on these lessons and tackling some of these questions regarding IoT data sharing.