Rebecca Skloot‚Äôs remarkable book The Immortal Life of Henrietta Lacks has quite a following among health lawyers. As an excerpt from the book explains,
Henrietta Lacks was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells ‚Äî taken without her knowledge ‚Äî became one of the most important tools in medicine. The first ‚Äúimmortal‚Äù human cells grown in culture, her cells ‚Äî known as ‚ÄúHeLa cells‚Äù ‚Äî are still alive today, though she has been dead for more than 60 years.
If you could pile all HeLa cells ever grown onto a scale, they‚Äôd weigh more than 50 million metric tons ‚Äî as much as a hundred Empire State Buildings. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the effects of the atom bomb; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave.
Skloot tells the story of the Lacks family, which never shared in the prosperity based on the HeLa cells. This is old news for any property student familiar with Moore v. Regents, but it‚Äôs particularly poignant in this context.
Now Skloot has worked to share the book‚Äôs proceeds with the Lacks family. As a recent news article explains,
Since the book‚Äôs debut a year ago, it has earned rave reviews, prizes, a movie deal with HBO and a steady spot on best-seller lists. And Ms. Skloot is making good on her pledge to share the financial windfall with the Lackses. Soon after the book came out, she created the Henrietta Lacks Foundation to help Mrs. Lacks‚Äôs descendants, some of whom suffered from the whirlwind of publicity, misinformation and scam artists surrounding HeLa cells, not to mention a lack of insurance to pay for any of the medical advances Mrs. Lacks‚Äôs cells made possible. . . .
The foundation ‚Äî which is still in the process of applying for nonprofit status ‚Äî is paying for a high-tech hearing aid for Mrs. Lacks‚Äôs youngest son, Zakariyya; truck repairs for her middle son, Sonny; new teeth for her granddaughter Kimberly; braces for her great-granddaughter Aiyana Rodgers; and, yes, tuition, books and fees for five of her grandchildren and great-grandchildren.
Whatever one thinks of the proper compensation for research subjects, it is disheartening to consider the economic difficulties of the Lacks family. (How can a society that spends, on average, $1425 per year on care and maintenance of its pets, not provide dental care for all?)
I think part of the answer lies in our constant striving for ‚Äúinnovation,‚Äù and the comparative devaluation of dissemination of innovation. My colleague Gaia Bernstein has written about these trends in several contexts. I have also worried about the lack of a US industrial policy for distributing the gains of innovation. I first came to these conclusions in the context of a paper I wrote on ‚Äúimmortal stem lines,‚Äù almost a decade ago. As the abstract argued:
[I]nnovations that now look benign might lead to an era of untrammeled biotechnological manipulation of our lives. For example, the same technology used to eliminate disease-causing genes or to clone embryos may eventually be deployed to produce genetically engineered children. That could, in turn, entrench class differences, since only the wealthy could afford the most desirable genetic enhancements. . . . Public debate on regenerative medicine must acknowledge this inequality. Societies and individuals can invest in it in good conscience only if they are seriously committed to extending extant medicine to all.
Without more attention to those at the bottom of the economic heap, the biotech project might recall these haunting lines from John Bunyan‚Äôs ‚ÄúThe Pilgrim‚Äôs Progress:‚Äù ‚ÄúNow he had not run far from his own door, but his wife and children perceiving it, began crying after him to return, but the man put his fingers in his ears, and ran on, crying, Life! Life! eternal life.‚Äù Gary Shteyngart‚Äôs recent novel imagines a world where a company that sells modern-day ‚Äúimmortalization services‚Äù only takes on clients who promise to prioritize payments for the company‚Äôs ‚Äúdechronificaiton‚Äù over any claims by relatives for help. They don‚Äôt even consider the possibility that those seeking endless self-preservation might be tempted to give to charity instead. Michel Houllebecq‚Äôs much worse novel, The Possibility of an Island, carries the trope further, imagining a future where the wealthy simply clone themselves into the future rather than worrying about reproducing.
In my article on immortality, I reach conclusions similar to those of Andre Gorz in The Immaterial. Whenever we come across a project that
will enable ‚Äòus‚Äô to free ‚Äòourselves‚Äô from the contingency of our factuality. . . . to recreate and transcend ‚Äòourselves‚Äô or even abolish the human condition[,] [t]his re-creation might be said the be the supreme stage of self-production. But it is a grammatical mirage. . .. [There is a] difference between the natural body and the body reprogrammed by science. . . .
In my own words, from my 2002 article:
Artificial-intelligence [based immortality] projects are unconvincing because their products lack bodies, and therefore cannot experience the sense-perceptions that are fundamental to human consciousness. Given the inevitable decay and profound importance of the brain, perpetual rounds of organ replacement seem only to offer their beneficiaries a series of lives, and not really a chance to maintain a coherent one. Neither the inorganic nor the organic forms of immortality offered by these two families of technologies offers indefinite life that is recognizably human or continuous with that of the person who employs them.
Nevertheless, I expect the ‚Äúimmortality project‚Äù will continue to attract followers. John Gray‚Äôs book ‚ÄúThe Immortalization Commission‚Äù follows the Soviet elite who wished for a this-worldly resurrection. He sees similar aspirations today:
The hopes that led to Lenin‚Äôs corpse being sealed in a Cubist mausoleum have not been surrendered. Cheating aging by a low-calorie diet, uploading one‚Äôs mind into a super-computer, migrating into outer space [are all present day aspirations] . . . Longing for everlasting life, humans show that they remain the death-defined animal.
Today it is not a communist elite that is likely to continue the immortality project, but rather those billionaires who believe their lifespans should be as much longer than the average Joe‚Äôs as their fortunes eclipse his bank account. There is a slight chance the innovations they fund can ‚Äútrickle down‚Äù to all, but in a world of limited resources, new variations on cryonics may not be the best place for funds to be allocated.
(This post first appeared on Health Reform Watch, the web log of the Seton Hall University School of Law, Health Law & Policy Program.)
Frank Pasquale, JD, Editor-in-Chief of Health Reform Watch, is the Schering-Plough Professor in health care regulation and enforcement at Seton Hall Law School and is the Associate Director of the Center for Health & Pharmaceutical Law & Policy. He has distinguished himself as an internationally recognized scholar in health, intellectual property, and information law and has made numerous academic presentations at universities across North America and at the National Academy of Sciences.