Me, my cells and I: reflecting on the value of the genome in light of the Lacks family settlement

By Aileen Editha.

“Not only were the HeLa cells derived from Henrietta Lacks – the HeLa cells are Henrietta Lacks”

– Ben Crump, attorney for the Lacks family.

(He)nrietta (La)cks

Henrietta Lacks was a Black tobacco farmer living in Baltimore, Maryland. She was treated for cervical cancer at Johns Hopkins University Hospital, one of the few hospitals in the area that treated Black patients from lower socio-economic backgrounds. Without Lacks’ knowledge or consent, her tumour was stored and processed after it had been removed. From this process, it was found that Henrietta’s cells had an innate ability to proliferate. This was later patented into “HeLa”—named after the first two letters of her first and last names—the first immortalized human cell line. As the oldest and most commonly used human cell line, HeLa was used to develop Polio and COVID-19 vaccines and further research on leukemia, AIDS, and the impact of zero gravity on human cells in space.

Henrietta passed away from cervical cancer in 1951, and her story was left untold until 2010. Global recognition of her legacy, from institutions such as Johns Hopkins University Hospital and the World Health Organization, only came in recent years following tireless advocacy and the COVID-19 pandemic. And her story is now back in the limelight.

The settlement

The Lacks family recently announced that they have reached a settlement with Thermo Fisher Scientific, the biotech company that has used and profited from the cell line “HeLa”, which had been unlawfully obtained and processed from Henrietta’s cervical cancer tumour in 1951. Henrietta Lacks’s estate filed a legal suit against the company in 2021 as the company—along with other researchers—have directly and indirectly profited from “HeLa” while the Lacks family continued to live in poverty for most of their lives.

Henrietta Lacks’s—along with her family’s—story raises numerous questions on various topics such as the prevalence of racism in medicine, the meaning of appropriate consent, and the need to reform the ethics of genetic research. My focus, however, is on the relationship between the gene and the person as well as revisiting the issue of ownership over genetic materials.

Owning the genome

Crump’s statement (provided above) is a powerful reminder of how we (as persons) may consider our biological materials and cells—even when they have been separated from us—as still being a part of us or, at least, having so much personal value. Unfortunately, this statement is, to an extent, a legal fiction.

Most common law jurisdictions treat genetic materials like any other objects. They are regulated through property and intellectual property law, depending on whether they are tangible or intangible. Corporeal property rights regulate how separated body parts and biological materials (e.g. blood or sperm samples) are stored and used, whereas intellectual property rights, for instance, regulate patent rights over a cell line.

Using (intellectual) property rights to regulate ownership, rights, and interests over genetic materials was borne out of necessity and convenience. With scientific and technological growth, the human genome became increasingly recognised as valuable raw materials; at least some kind of regulation was needed, and property rights seemed to be a good fit.

The problem with property

Although using property and intellectual property rights has its benefits, it has also posed some issues in relation to the relationship we have with our separated genetic materials. In particular, the concept of “property rights” assumes that there is a clear boundary between the “subject” (persons like you and I) and the “object” (thing or materials we own). This may seem straightforward with everyday objects. My pen and backpack, for instance, are “objects” while I, the owner, am the “subject”. But what happens when these lines are blurred?

Such is the case in regard to our biological and genetic materials. Although the law readily considers them as “objects” that can be owned and profited from by other people, some persons—myself included—may feel an inherent reluctance to adopt this view. As a legal researcher and woman of colour, I struggle to navigate this boundary as my beliefs and cultural heritage considers human genetic materials as sacred and priceless. Other members of the Black, Indigenous, and People of Colour (BIPOC) communities, for instance, members of Indigenous populations across Turtle Island and globally, e.g. the Māori, also view them as sacred and belonging to the community as opposed to the individual.

The news of the Lacks family settlement is a moment of justice and reminder of the unique relationship that some—or all—of us have with our genetic materials, even after separation. Though it is welcomed, it also serves as an opportunity to (re-)consider whether and how the law can, finally, recognise and respect this belief.


Author: Aileen Editha

Affiliation: Faculty of Law, Queen’s University, Kingston (Katarokwi), Ontario, Canada

Competing interests: None declared

Contact: Twitter @aileenedithap

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