Who owns data about you?

Article by Wendy Wong: “The ascendancy of artificial intelligence hinges on vast data accrued from our daily activities. In turn, data train advanced algorithms, fuelled by massive amounts of computing power. Together, they form the critical trio driving AI’s capabilities. Because of its human sources, data raise an important question: who owns data, and how do the data add up when they’re about our mundane, routine choices?

It often helps to think through modern problems with historical anecdotes. The case of Henrietta Lacks, a Black woman living in Baltimore stricken with cervical cancer, and her everlasting cells, has become well-known because of Rebecca Skloot’s book, The Immortal Life of Henrietta Lacks,and a movie starring Oprah Winfrey. Unbeknownst to her, Lacks’s medical team removed her cancer cells and sent them to a lab to see if they would grow. While Lacks died of cancer in 1951, her cells didn’t. They kept going, in petri dishes in labs, all the way through to the present day.

The unprecedented persistence of Lacks’s cells led to the creation of the HeLa cell line. Her cells underpin various medical technologies, from in-vitro fertilization to polio and COVID-19 vaccines, generating immense wealth for pharmaceutical companies. HeLa is a co-creation. Without Lacks or scientific motivation, there would be no HeLa.

The case raises questions about consent and ownership. That her descendants recently settled a lawsuit against Thermo Fisher Scientific, a pharmaceutical company that monetized products made from HeLa cells, echoes the continuing discourse surrounding data ownership and rights. Until the settlement, just one co-creator was reaping all the financial benefits of that creation.

The Lacks family’s legal battle centred on a human-rights claim. Their situation was rooted in the impact of Lacks’s cells on medical science and the intertwined racial inequalities that lead to disparate medical outcomes. Since Lacks’s death, the family had struggled while biotech companies profited.

These “tissue issues” often don’t favour the individuals providing the cells or body parts. The U.S. Supreme Court case Moore v. Regents of the University of California deemed body parts as “garbage” once separated from the individual. The ruling highlights a harsh legal reality: Individuals don’t necessarily retain rights of parts of their body, financial or otherwise. Another federal case, Washington University v. Catalona, invalidated ownership claims based upon the “feeling” it belongs to the person it came from.

We can liken this characterization of body parts to how we often think about data taken from people. When we call data “detritus” or “exhaust,” we dehumanize the thoughts, behaviours and choices that generate those data. Do we really want to say that data, once created, is a resource for others’ exploitation?…(More)”.