In 1951, it was not illegal for doctors to take Henrietta’s cells for research without consent. By 1999, when The Immortal Live of Henrietta Lacks was published, there was still no clear law requiring that patients give consent for the scientific use of their own bodily tissues. In fact, human tissues are still constantly collected and used for research without patients’ knowledge.
“Today most Americans have their tissue on file somewhere,” Rebecca Skloot writes. Nearly any time patients give blood or have any bodily tissue removed, the excess matter is stored away in tissue banks. Very little of this material has any financial worth of its own, but all of the material in combination is extremely useful for medical research.
The debate about the use of human tissue in research is ongoing. Skloot notes that:
people often have a strong sense of ownership when it comes to their bodies…But a feeling of ownership doesn’t hold up in court.
Interestingly, most patients who learn about the use of their tissues in research want information and the right to influence how it is used, but most have not demanded monetary compensation. A few individuals and groups have managed to remove their own or their families’ tissues from research situations, but no clear ethical standards have ever been created.
Rebecca points out that it is not exactly bad that medical companies make money off of biological materials. Money enables these companies, which serve a vital function, to exist. She writes, “Like it or not, we live in a market-driven society, and science is part of that market.” However, she suggests that the thorny ethical issues regarding money, human tissues, and human rights need further sorting out.
Few patients have ever attempted to benefit financially from the scientific use of their tissues. John Moore, who lost his lawsuit attempting to gain benefit from the valuable cell line created from his cancerous spleen, died in 2001. The judges who struck down his lawsuit said that research would be hindered if patients had a right to claim ownership of their own cells. Ironically, this judgment has led medical companies to commercialize biological materials more aggressively—sometimes so aggressively that they end up hindering medical research.
The Lackses, for their part, have never filed a suit for monetary compensation from HeLa, and it is unlikely that they would win such a legal fight anyway. They might be able to stop HeLa research worldwide on the grounds that it violates their privacy because it contains their DNA. However, they do not want to do this. As Sonny says:
I’m proud of my mother and what she done for science. I just hope Hopkins and some of the other folks who benefited off her cells will do something to honor her and make right with the family.