The Immortal Life of Henrietta Lacks (45 page)

Where They Are Now

Alfred Carter Jr
., Deborah’s son, is in prison, serving a thirty-year sentence for robbery with a dangerous and deadly weapon, and first-degree assault with a handgun. While incarcerated, he went through drug and alcohol rehabilitation, got his GED, and taught GED classes to other inmates for twenty-five dollars a month. In 2006 he wrote to the judge who sentenced him, saying he wanted to pay back the money he stole and needed to know who to send it to.

Dr. Sir Lord Keenan Kester Cofield
’s whereabouts are unknown. Most recently, he served several years in prison for trying to buy jewelry at Macy’s with a stolen check, and filed several lawsuits while incarcerated. In 2008, after being released from prison, Cofield filed a seventy-five-page lawsuit—his last to date—that a judge called “incomprehensible.” He sued 226 parties for more than $10 billion, and argued that past decisions in all his cases should be reversed in his favor, and that anyone who’d printed his name without permission should be included in his suit, because he’d copyrighted his name. I was never able to get in touch with him to interview him for this book.

Cliff Garret
, Henrietta’s cousin, lived in his farmhouse in Clover until 2009, when his failing health required him to move in with his son in Richmond, Virginia, where he currently lives.

HeLa
is still one of the most commonly used cell lines in laboratories around the world. When this book went to press in 2009, more than 60,000 scientific articles had been published about research done on HeLa, and that number was increasing steadily at a rate of more than 300 papers each month. HeLa cells are still contaminating other cultures and causing an estimated several million dollars in damage each year.

Howard Jones
, Henrietta’s doctor, is an emeritus professor at Johns Hopkins and Eastern Virginia Medical School. He founded the Jones Institute for Reproductive Medicine in Norfolk, Virginia, with his late wife, Georgeanna. They were pioneers in the field of infertility treatments, and were responsible for the first test-tube baby born in the United States. When this book went to press, he was ninety-nine years old.

Mary Kubicek
is retired and living in Maryland.

Zakariyya, Sonny
, and
Lawrence Lacks
were deeply affected by Deborah’s death. Lawrence charged more than $6,000 to his credit cards to cover the cost of her burial, and when this book went to press, Sonny was saving money to buy her a tombstone. Zakariyya stopped drinking and began studying the lives of yogis and others who’d achieved inner peace. He started spending more time with his family, including his many nieces and nephews, who hug and kiss him on a regular basis. He smiles often. Sonny has sworn to uphold Deborah’s desire to gain recognition for their mother. Today, when the Lacks brothers talk about Henrietta, they focus on the importance of her contribution to science. They no longer talk about suing Johns Hopkins, though Lawrence and Zakariyya still believe they’re owed a share of the profits from HeLa cells.

Christoph Lengauer
is Global Head of Oncology Drug Discovery at sanofiaventis, one of the biggest pharmaceutical companies in the world. Many of the scientists working for him use HeLa cells on a routine basis. He lives in Paris, France.

Davon Meade
and
(Little) Alfred Jr
., Deborah’s grandsons, live in Baltimore, as do twenty-two of Henrietta’s other descendants, including her grandchildren, great-grandchildren, and great-great-grandchildren. Two others live in California.

John Moore
appealed to the U.S. Supreme Court, which refused to hear his case. He died in 2001.

Roland Pattillo
is a professor at Morehouse School of Medicine, where he continues to hold his HeLa conference in Henrietta’s honor each year. Pattillo and his wife, Pat, plan to buy a marker for Henrietta’s grave, to be placed near her mother’s tombstone in the Lacks family cemetery.

James Pullum
, Deborah’s ex-husband, is still preaching in Baltimore.

Courtney Speed
still runs her grocery store, where she continues to teach local children to do math, and hopes to open a Henrietta Lacks Museum.

Afterword

W
hen I tell people the story of Henrietta Lacks and her cells, their first question is usually
Wasn’t it illegal for doctors to take Henrietta’s cells without her knowledge? Don’t doctors have to tell you when they use your cells in research?
The answer is no—not in 1951, and not in 2009, when this book went to press.

Today most Americans have their tissue on file somewhere. When you go to the doctor for a routine blood test or to have a mole removed, when you have an appendectomy, tonsillectomy, or any other kind of
ectomy
, the stuff you leave behind doesn’t always get thrown out. Doctors, hospitals, and laboratories keep it. Often indefinitely.

In 1999 the RAND Corporation published a report (the first and, so far, last of its kind) with a “conservative estimate” that more than 307 million tissue samples from more than 178 million people were stored in the United States alone. This number, the report said, was increasing by more than 20 million samples each year. The samples come from routine medical procedures, tests, operations, clinical trials, and research donations. They sit in lab freezers, on shelves, or in industrial vats of liquid nitrogen. They’re stored at military facilities, the FBI, and the National Institutes of Health. They’re in biotech company labs and most hospitals. Biobanks store appendixes, ovaries, skin, sphincters, testicles, fat, even foreskins from most circumcisions. They also house blood samples taken from most infants born in the United States since the late sixties, when states started mandating the screening of all newborns for genetic diseases.

And the scale of tissue research is only getting bigger. “It used to be, some researcher in Florida had sixty samples in his freezer, then another guy in Utah had some in his,” says Kathy Hudson, a molecular biologist who founded the Genetics and Public Policy Center at Johns Hopkins University and is now chief of staff at NIH. “Now we’re talking about a massive, massive scale.” In 2009 the NIH invested $13.5 million to develop a bank for the samples taken from new borns nationwide. A few years ago the National Cancer Institute started gathering what it expects will be millions of tissue samples for mapping cancer genes; the Genographic Project began doing the same to map human migration patterns, as did the NIH to track disease genes. And for several years the public has been sending samples by the millions to personalized DNA testing companies like 23andMe, which only provide customers with their personal medical or genealogical information if they first sign a form granting permission for their samples to be stored for future research.

Scientists use these samples to develop everything from flu vaccines to penis-enlargement products. They put cells in culture dishes and expose them to radiation, drugs, cosmetics, viruses, household chemicals, and biological weapons, and then study their responses. Without those tissues, we would have no tests for diseases like hepatitis and HIV; no vaccines for rabies, smallpox, measles; none of the promising new drugs for leukemia, breast cancer, colon cancer. And developers of the products that rely on human biological materials would be out billions of dollars.

How you should feel about all this isn’t obvious. It’s not as if scientists are stealing your arm or some vital organ. They’re using tissue scraps you parted with voluntarily. Still, that often involves someone taking part of you. And people often have a strong sense of ownership when it comes to their bodies. Even tiny scraps of them. Especially when they hear that someone else might be making money off those scraps, or using them to uncover potentially damaging information about their genes and medical histories. But a
feeling
of ownership doesn’t hold up in court. And at this point no case law has fully clarified whether you own or have the right to control your tissues. When they’re part of your body, they’re clearly yours. Once they’re excised, your rights get murky.

Kathy Hudson, who has conducted focus groups about the public’s feelings on the tissue issue, says she believes that tissue rights have the potential to become a bona fide movement.

“I could see people starting to say, ‘No, you can’t take my tissues,’ “ she told me. “All I can say is, we better deal with the problems now instead of waiting until that happens.”

     
T
here are, essentially, two issues to deal with: consent and money. For most people, knowing if and how their tissues are being used in research is a far bigger issue than profiting from them. Yet when this book went to press, storing blood and tissues for research did not legally require informed consent, because the law governing such things doesn’t generally apply to tissue research.

The Federal Policy for the Protection of Human Subjects, also known as the Common Rule, requires informed consent for all human-subject research. But in practice, most tissue research isn’t covered because: (i) it’s not federally funded, or (2) the researcher never learns the identity of the “donors” or has firsthand contact with them, in which case it’s not considered research on humans. So in the end, the Common Rule doesn’t actually govern most tissue research.

Today, if doctors want to gather tissues from patients strictly for research purposes—as in Henrietta’s case—they are required to get informed consent. But storing tissues from diagnostic procedures like, say, mole biopsies, and using them in future research doesn’t require such consent. Most institutions still choose to get permission, but there’s no uniformity in the way that’s done. A few hand out enough information to fill a small book, explaining exactly what will be done with all patient tissues. But most just include a short line in an admission form saying that any tissues removed may be used for education or research.

According to Judith Greenburg, director of the Division of Genetics and Developmental Biology at the National Institute of General Medical Science, the NIH now has “very stringent guidelines” requiring consent for any tissues collected for their banks. “It’s very important for donors to understand what the consequences of tissue research might be,” she says. But their guidelines apply only to NIH research, and they’re not legally binding.

Supporters of the status quo argue that passing new, tissue-specific legislation is unnecessary, and that the current oversight practices are enough. They point to institutional review boards; the many professional guidelines, like the American Medical Association’s Code of Ethics (which requires doctors to inform patients if their tissue samples will be used in research or lead to profits); and several post Nuremberg codes, including the Declaration of Helsinki and the Belmont Report, all of which list consent as a requirement. But guidelines and ethical codes aren’t laws, and many tissue-rights supporters say internal review doesn’t work.

Beyond simply knowing their tissues are being used in research, some tissue-rights activists believe donors should have the right to say, for example, that they don’t want their tissues used for research on nuclear weapons, abortion, racial differences, intelligence, or anything else that might run contrary to their beliefs. They also believe it’s important for donors to be able to control who has access to their tissues, because they worry that information gathered from tissue samples might be used against them.

In 2005, members of the Native American Havasupai Tribe sued Arizona State University after scientists took tissue samples the tribe donated for diabetes research and used them without consent to study schizophrenia and inbreeding. Their case is still pending. In 2006, some seven hundred new mothers found out that doctors had taken their placentas without consent to test for abnormalities that might help the hospital defend itself against future lawsuits over birth defects. And in a handful of cases, genetic tests performed on people without their consent have been used to deny workers’ compensation or health insurance claims (something now protected against by the Genetic Information Nondiscrimination Act of 2008).

Because of cases like these, a growing number of activists—ethicists, lawyers, doctors, and patients—are arguing cases and pushing for new regulations that would grant people the right to control their tissues. And a growing number of tissue “donors” are suing for control of their samples and the DNA inside them. In 2005, six thousand patients demanded that Washington University remove their tissue samples from its prostate-cancer bank. The university refused, and the samples were tied up in litigation for years. So far, two courts have ruled against the patients, relying on the same logic used in the Moore case (that giving patients those rights would inhibit research, etc). In 2008 the patients appealed to the Supreme Court, which refused to hear their case. When this book went to press, they were contemplating class action. Most recently, in July 2009, parents in Minnesota and Texas sued to stop the nationwide practice of storing and conducting research—without consent—on fetal blood samples, many of which can be traced back to the infants they came from. They argue that research on those samples is an invasion of their children’s privacy.

Because of the Health Insurance Portability and Accountability Act (HIPAA) of 1996, there is now clear federal law in place to prevent the kind of privacy violation that happened to the Lacks family when doctors at Hopkins released Henrietta’s name and her medical records. Since tissues connected to their donors’ names are subject to strict regulation under the Common Rule, samples are no longer named using donor initials as Henrietta’s cells were; today they’re usually identified by code numbers. But, as Judith Greenburg of the NIH says, “It’s never possible to one-hundred-percent guarantee anonymity, because in theory we can now sequence genes and find out who anyone is from their cells. So the consent process has to be more about laying out the risks of tissue research so people can decide whether they want to participate.”