The Crazy Woman

Medical researchers are portrayed in bestselling nonfiction book The Immortal Life of Henrietta Lacks by Rebecca Skloot as usually self-serving, callous, and often greedy for fame and fortune.

And they are, from the perspective of unworldly, uneducated folks such as the ebullient Lacks clan from Clover, Virginia whose “family still farmed the tobacco fields their ancestors had worked as slaves.”

Physicians and researchers at Johns Hopkins Hospital who treated young wife and mother Henrietta, from diagnosis in 1949 to death in 1951, for a uniquely aggressive cancer were certainly driven by normal concerns for patient care. Mrs. Lacks’ hearty specimens, taken during treatment, were the world’s first cells to reproduce (“culture”) under controlled laboratory conditions.

The physicians and researchers were also energized by scientific curiosity, though… the sort of creative curiosity that pushed the U.S. medical community to the mid 20th-century forefront of life-saving breakthroughs in genetics, gene therapies and cancer research. Intrigued in the 1950s and beyond by new scientific frontiers, medical professionals at famed research institutions as Johns Hopkins competed ferociously to author the latest medical innovations.

As a result of the hectic, heated race for medical research discoveries, the needs and rights of individual patients and their families were largely forgotten or accorded low priority. Commented a lab assistant assigned to Mrs. Lacks’ autopsy, “Oh jeez, she’s a real person… it hit me for the first time that those cells we’d been working with all this time and sending all over the world, they came from a live woman.”

The New York Times explains the legacy of Henrietta Lacks’ cells, which are known as HeLa in medical lingo:

“After Henrietta Lacks’s death, HeLa went viral, so to speak, becoming the godmother of virology and then biotech, benefiting practically anyone who’s ever taken a pill stronger than aspirin. Scientists have grown some 50 million metric tons of her cells, and you can get some for yourself simply by calling an 800 number.

“HeLa has helped build thousands of careers, not to mention more than 60,000 scientific studies, with nearly 10 more being published every day, revealing the secrets of everything from aging and cancer to mosquito mating and the cellular effects of working in sewers.”

The Lacks family received no compensation for their family member’s sacrifice or contribution to scientific advances. Nothing. And no one can confidently attest that Henrietta knowingly or willingly donated her cells for research.

This fascinating book recounts several other tales of brilliant but greedy physicians associated with top medical centers who reaped millions in the 1980s and later by developing and selling genetic cell lines based on tissues taken from unsuspecting patients. Doubtlessly, patients have been cheated of sharing in profits stemming from medical research, especially since the advent of Big Pharma (i.e. the powerful pharmaceutical industry and its lobbyists).

Yes, some medical research pioneers and innovators can be uncomfortably self-serving, callous and greedy in their pursuit of bona fide miracles… just as all-too-human pioneers in any field, from the discoverers and explorers of America to the discoverers and explorers of cyberspace were often self-serving, callous and personally greedy.

But we need their discoveries. Their innovations. The fruits of their wise labors. Their miracles that advance human progress and better the lives of men, women and children.

I think of family and friends we’ve lost to cancer, loved ones who might have been spared terrible struggles and despair:

• Prosie, 50-year-old wife and mother of two teenage boys, who didn’t grasp the severity of her rare hip joint cancer until too late
• Pete, my 36-year-old co-worker who was accurately diagnosed with pancreatic cancer only days before his death, leaving behind a bewildered young wife and 1-year-old son
• Meg, who triumphantly surpassed the five-year breast cancer survivor milestone, only to suffer mortal setback in year six
• Diana, my former mother-in-law, who suffered mightily with lung cancer

I think of Walter who resides now in hospice care, losing his battle against catastrophic brain cancer.

They and their families would have traded the sun, the moon, the whole world for a cure… a cure that could be found only from long-term medical research by intelligent, driven, highly educated and experienced professionals who sometimes fall prey to personal imperfections.

The Immortal Life of Henrietta Lacks by Rebecca Skloot is a surprisingly interesting, poignant and artful interweaving of humanity, medicine, the medical community and poverty laced with dollops of American history.

While I strongly recommend this book, please be cautioned that a vital aspect of the entire story has been omitted: that of the immense good accomplished and human suffering alleviated by American medical research.