Family remembers Lacks’ legacy

In 1951, Henrietta Lacks, a 31-year-old African-American woman and mother of five, was treated at Johns Hopkins Hospital in Baltimore for an unusually aggressive form of cervical cancer. As was routine at the time, the cells from her biopsy were used in research without her consent. Henrietta died less than a year after her diagnosis, but her cells became the first “immortal” line of human cells - unlike other cells that died off in the laboratory environment, these survived and kept on reproducing.

The cells, code-named HeLa (pronounced hee-lah), have become the most widely used cell line in biomedical research and were vital to developing the polio vaccine, chemotherapy, cloning, in- vitro fertilization and many other important advances.

Yet it wasn't until 1973 that Henrietta's family learned about the cells, leaving them with unanswered questions and a struggle to understand how part of their mother lived on even though she had died years before.

Their story is told in the book, “The Immortal Life of Henrietta Lacks” by Rebecca Skloot. On Thursday, two of Henrietta Lacks' descendants - grandson David Lacks Jr., and great-granddaughter Victoria Baptiste - will speak at the University of Iowa College of Public Health and the Iowa City Book Festival. The events are free.

The experience puts a human face to the complex issues surrounding science, ethics and privacy, said Corinne Peek-Asa, associate dean for research in the College of Public Health.

“Today, we recognize these biological samples as having scientific value, and although we have developed more sophisticated and ethical methods for collecting them, the ethical issues surrounding tissue collection remain very controversial,” Peek-Asa said.

Millions of tissue samples are preserved each year for use in research that could lead to new discoveries and treatments, and, in some cases, lucrative patents. But this research also raises thorny questions: Do we have the right to control what happens to tissue taken from our body? How protected is our genetic information?

The Lacks family was thrust into the news again in March when German scientists published the HeLa genome online without consulting the family. After objections, scientists removed the DNA sequence from the web.

In August, the National Institutes of Health and the Lacks family worked out an agreement that gives scientists controlled access to the genetic sequence of the HeLa cells. This “would require researchers to apply to the NIH to use the data in a specific study and to agree to terms of use defined by a panel including members of the Lacks family,” according to an article published in the journal Nature. David Lacks Jr. is one of two Lacks family representatives on that panel.