Who owns your cells? New book tackles thorny issue

NEW YORK (Reuters Health) - No one cares about the untold numbers of cells our bodies slough off every day. But imagine that someone got hold of your cells -- and the DNA they contain -- and used them to cure a disease, or somehow managed to make a lot of money off of them. Should you be proud? Could you claim royalties?

In short, who owns your cells once they leave your body?

That was never a question Henrietta Lacks had the chance to face. A poor African-American tobacco farmer born in 1920, Lacks is the subject of Rebecca Skloot’s new book “The Immortal Life of Henrietta Lacks” (Crown, February 2010).

The book, which hit the New York Times bestseller list this week, brings many of these thorny ethical issues out into the open where they belong, Skloot told Reuters Health during a live online discussion on February 11. (Click here for a limited transcript.) "A lot of this story is about communicating science to the general public," she said.

Lacks died in 1951 from cervical cancer, survived by her five children and her husband. She is also survived by some of her cervix: Without her knowledge, Lacks’ doctor had removed a piece of her tumor for research purposes.

The cancerous cells soon proved to be a hardy bunch, multiplying indefinitely as long as they had access to a few nutrients. Unheard of at the time, the immortal cell line offered scientists an unlimited supply of raw material and a chance to keep experimenting on the same cells as long as they wanted.

For the next half-century, Henrietta Lacks’ cells, dubbed HeLa by researchers, left lasting marks on science: They provided a cheap and easy way to test the polio vaccine, for instance, and helped develop the techniques that later made Dolly the cloned sheep a reality. They even went to space so that scientists could explore the effects of zero gravity on human tissue.

The interest in Lacks’ cells soon became more than just a noble quest for knowledge. For example, the company Microbiological Associates -- which became a part of biotech giants Invitrogen and BioWhittaker -- started out selling HeLa cells. Today, more than 17,000 US patents involve HeLa cells one way or another, according to Skloot’s book, and HeLa is one of the most popular cell lines in the world. HeLa products now sell for as much as $10,000 per vial, Skloot writes.

Yet until the 1970s, Lacks’ family was completely unaware of the scientific and commercial triumphs of her DNA. In fact, some of Lacks’ descendants don’t even have health insurance, Skloot said yesterday.

Today, since a 1990 California Supreme Court decision, cells are considered biological “waste” once they leave the body. Leukemia patient John Moore sued the physician who treated him and later helped develop a commercial cell line based on his cancer tissue.

Although divided, the court found that Moore had lost the property rights to his cells after doctors removed them from him. By the same token, he had no rights to profit from any commercial application of the orphaned cells.

So far, that has settled the legal question. But “what is legal may not be the same as what is ethical,” bioethicist Karen Maschke, of the Hastings Center, in Garrison, NY, said during the discussion with Skloot.

The fact that the Lacks family never knew what scientists were doing with Henrietta’s cells is critical. “People want to know,” Maschke added. “Science has to be open and honest.”

As it is, Skloot said scientists fear logistical headaches if they start relinquishing control and giving out a lot of information to the general public. Patients may veto research projects involving their cells due to ethical qualms, for instance, or may demand revenues.

Yet Lacks’ children and grandchildren, on the other side of the equation, feel abandoned by the scientific community, which benefited enormously from the HeLa cells but left the family with nothing.

Reading her book, Skloot said, has helped the Lacks family get a better sense of what happened to them. In the end, she believes, “it does good for science when everyone understands.”

Skloot has created The Henrietta Lacks Foundation -- click here for more -- to provide support for the Lacks as well as assistance to African Americans pursuing education in science or medicine.