The Consent Conundrum
Decades after a woman's cervical cancer cells were taken without her permission, we're still trying to determine what rights researchers have to your body.
In March, the Texas Civil Rights Project sued the state on behalf of four parents and an expecting mother. They argued that storing the samples without consent constituted a violation of privacy and "an unlawful search and seizure." Though the Texas samples were stripped of the infants' names, plaintiffs said the DNA embedded in each cell quashed those privacy measures. In May, the Texas Legislature passed a law requiring the state to notify parents of the blood-collection program and allow them to opt out by sending a letter to the health department after the birth of a child, in which case the samples are destroyed after being tested for birth defects.
Months later, the state agreed to destroy all 5.3 million blood samples stored without consent since the program began. Texas had spent untold millions of dollars collecting blood now headed for the biohazard bin—and it had squandered incalculable sums of moral and persuasive capital. In the roughly five months after the law was passed, during which about 240,000 new Texans were born, fewer than 7,000 were opted out of the storage program. Even with a large margin for twins and triplets, that's less than 5 percent, but that number could have a large effect on blood spot research. Collections such as Texas' were prized for their lack of selection bias, since all children born in the state—regardless of their parents' income level, ethnicity, or distrust of science—were represented. Each withdrawal makes the collection disproportionately less valuable.
Other recent examples demonstrate problems with getting the right kind of consent. In the early 1990s, members of the Havasupai Tribe donated blood to Arizona State University researchers for studies on diabetes, which was becoming increasingly common within the tribe. But the blood samples were soon used for research on schizophrenia, inbreeding, and evolutionary genetics—uses to which the tribe objected and had not consented. They learned about this nondiabetes research only a decade later. In 2004, the tribe sued the university for $50 million, a case that continues to bounce around the courts.
Trust of Johns Hopkins and other hospitals in the 1950s was so low among the African-American community that there's a decent chance Henrietta Lacks would have declined to donate her cells had she been asked. Myth and fact blended in stories of body-snatching and dodgy human experimentation. When Lacks died, six months after her initial biopsy, Hopkins was legally required to request permission for an autopsy or tissue removal. "I told them they could do a topsy. Nothin else," Lacks' husband told Skloot many years later. "Them doctors never said nuthin about keeping her alive in no tubes or growin no cells."
You could accuse the Texas plaintiffs of scaremongering, looting science of 5 million chances to cure childhood cancer. And you could argue that, had Johns Hopkins required Lacks' consent and had she said no, the polio vaccine or early cancer drugs would have arrived later, causing unnecessary suffering. Though Lacks' cells were the first to achieve "immortality," cell-culturing techniques were steadily improving and paved the way for infinitely replicating lines to supplement HeLa. But at the time, George Gey and cell culturists had had such poor luck in their craft that the assistant who first prepared HeLa had nearly given up. Aren't we "morally obligated," as Skloot quotes David Korn, Harvard's vice provost for research, "to allow [our] bits and pieces to be used to advance knowledge to help others"?
But it's shortsighted to pit consent against scientific progress in this way. Consent ultimately speeds us toward discovery and cures by boosting scientific trust within the communities that those researchers not only serve but also depend upon. The trend since Henrietta Lacks first arrived at Johns Hopkins' public ward has been toward research requiring consent more, not less, frequently. Patients have embraced their role in medical decision-making, and institutions have elevated the importance of ethics and public trust. If researchers (and the scientific community at large) want a steady flow of willing subjects, they have to resist the mirage of such shortcuts.