Saturday, May 5, 2012

In Every Person A Universe: The Immortal Life of Henrietta Lacks by Rebecca Skloot

The dream of immortality seems like the ultimate goal. It drives careers, sustains industries, and unites humanity in pursuit of that most precious of resources: time. Most of us fret over how to spend it, with some working to earn more, some wishing it would pass faster, some trying to enjoy what little we get. For one Herietta Lacks, her lifetime was trying, painful, and altogether brief and yet in a very real way, she may well outlive us all.

Released in 2009, Rebecca Skloot’s The Immortal Life of Henrietta Lacks charts a remarkable history that is at once deeply personal and of global consequence. The book begins with a series of historical flashbacks to Henrietta’s life, as a black woman living in a small Virginia community in 1951 and finding herself diagnosed with cervical cancer. Skloot alternates these with chapters of her own journey of research decades later, as a journalist determined to learn about the donor of the HeLa (‘Hee-la’) cells used in biological research around the world.

These cells, which in the fifties were coded with the first two letters of the donor’s name, were taken for medical research during Henrietta Lacks’ cancer treatments at Johns Hopkins Hospital. They proved unusually resilient and grew quickly in plentiful supply, making them ideal for research. Yet not only were these cells taken without Henrietta’s knowledge or consent, they went on to outlive her, eventually used in everything from the polio vaccine to experiments in zero gravity. Her family didn’t find out until decades after the fact, setting the stage for the ongoing legal and moral dispute over tissue donation.

Deborah Lacks looking at her mother's cells for the first time, 2001
Skloot becomes very much a character in her own work, meeting often after much resistance with Herietta’s descendants and helping them chase after the medial records and recognition their family was long denied. Genuinely human relationships and deeply candid interviews form the heart of the book. Deborah Lacks, one of Henrietta’s daughters, develops an endearing friendship with Skloot, and as two very different women they clearly challenge each other. Deborah’s voice, which Skloot makes a point to maintain uncensored, shines through: some of the book’s most moving passages capture Deborah’s struggle as she tries to learn who her mother truly was, beyond the impersonal fame of the HeLa cells. Racial and class politics play an often disturbing role in both Herietta’s life and the lives of her children, who lived in poverty and without healthcare, despite their mother’s contribution to untold dollars worth of research and patents. Skloot makes every effort to cover all angles of the story, conveying how little the rights of tissue donors were considered in the fifties let alone the rights of a woman in the ‘black wing’ of a charity hospital.

As the Lacks family begin to learn about the HeLa cells, they’re confronted with varying notions of immortality. Deeply religious, they attempt to reconcile the Christian concept of an afterlife with the empirical immortality the cells’ ongoing replication has achieved. Henrietta’s doctors never gave her the opportunity to consent, but they also did not attempt to educate her about the biological research they conducted. Though Skloot is not religious, she clearly shows the way that faith is layered deeply into the lives of the Lacks and how their 'faith' in doctors, combined with a lack of science education, put them at the mercy of a system they couldn't question. This brings home the need for scientific education more than ever, as the issue of consent in medical research becomes more and more pressing in an age of DNA testing and donor tissue banks.

Author Rebecca Skloot
Where some authors might have made this a book of stark contrasts science and religion, poverty and privilege, death and immortality Skloot elegantly coaxes out the nuances of each of these themes, presenting the often sobering facts alongside intensely personal anecdotes. The book also challenges readers to consider the questions of tissue donation for themselves, from the collective progress brought about by cellular research to the issue of individual rights for tissue donors, with compelling arguments presented on all sides. The book delves into a discourse that many people might not otherwise consider, and sets up in clear and concrete terms why it has repercussions for us all.

Skloot emphasizes her fact-checking, providing a long list of sources as well as helpful references. She has also founded the Henrietta Lacks Foundation, which seeks to give recognition to the Lacks family and others who “have made important contributions to scientific research without persoally benefiting from those contributions.”

Meticulously and passionately written, The Immortal Life of Henrietta Lacks presents a history of scientific research centered around one of the people who has made much of it possible. Henrietta’s great legacy also lives in her children and grandchildren, carried forward in ways beyond just biology. In passing on her hopes, her dreams, and her desire to do good, Henrietta achieved a form of immortality for which many of us still strive.

 Catharine Charlesworth is an avid lover of books, the web, and other inventive outlets for the written word. She has studied communication at the University of Toronto while working as a bookseller, and is currently employed in online advertising in downtown Toronto.

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