The Immortal Life of Henrietta Lacks | Study Guide

Rebecca Skloot

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The Immortal Life of Henrietta Lacks | Afterword | Summary

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Summary

Skloot goes over the issues the Henrietta Lacks story continues to raise, including who retains rights to biological tissue. Millions of samples from blood tests or surgeries are being held in storage, both in hospitals and in biological companies. There still is no law clarifying "whether you own or have the right to control your tissues."

A "Common Rule" requires "informed consent for all human-subject research," but many researchers don't know the source of their samples. If a doctor wants to remove tissue specifically for research, the patient must give informed consent, but if tissue is removed during a routine procedure, there is no rule saying researchers must gain permission to use it. Skloot says most institutions still ask for consent.

Courts have seen cases such as the suit brought by the Havasupai Tribe against the Arizona Board of Regents in 2004 for misuse of DNA samples; researchers said they were using tissues to study a particular illness but instead used them for other unrelated studies on subjects such as inbreeding, which the Havasupai Tribe considers taboo. Genetic tests, much more common now, can also lead to loss of health coverage, despite the Genetic Information Nondiscrimination Act of 2008, which has been threatened. HIPAA rules mean patient records cannot be divulged. Samples are not identified with patients' initials either, further protecting privacy, but DNA research may still allow people to be identified.

Commercialization of tissues makes it possible for companies to make drugs and tests, and companies can give the tissue away while charging processing fees. Scientists worry that telling patients about financial gain will make them subject to unacceptable financial agreements, but most patients who want to control their tissues are concerned about accessibility to researchers, not profits. Companies who have patented genes, such as Myriad, who holds the patent on breast cancer genes, have been sued not only by patient groups but by scientists, so very often it is the companies who are holding back research, not patients. Tissue rights activists insist patients should be told whether their tissues may bring financial gain. Researchers have been sued for taking money from pharmaceutical companies, but patients' rights to profits have not been mentioned in those suits.

The Lacks family has not sued anyone regarding the use of HeLa cells, and Sonny tells Skloot, "Dale [Deborah] wouldn't want that." He doesn't want to cause problems for researchers, but he also says Hopkins should "make right with the family" to honor his mother's contribution.

Analysis

The privacy issues around tissue research and patient rights are complex. Skloot's research into the various suits brought to court regarding use of cells and financial compensation show that patients want to be informed about exactly what their tissues are being used for. They also want to be informed if their cells could possibly provide them with financial gains. However, the real greed in the tissue rights argument comes from private companies, who keep researchers from free access to tissues, even issuing patents on genes. This tight control on who gets to use what is not exerted by patient groups. It is exerted by the people who have the most to gain financially from controlling access to the tissues.

The Common Rule, asking for informed consent from patients, is difficult to enforce when later researchers use the tissues for research that wasn't planned when samples were taken. If research specifically involves a group of people and their health issues, though, most scientists agree those people should be made aware of the research. Using medical information against patients by using their own tissues is unethical and violates privacy laws.

There is, however, a problem with privacy laws and DNA research. Even if a patient's identity is kept anonymous, it is still possible to identify the person using that person's DNA. There is no firm ruling on how to deal with this issue.

Regarding the monetary gains and patient rights of the Lacks family, "in theory" the Lacks family might have the right to "withdraw HeLa cells from all research worldwide." However, the family doesn't want to do this because they understand how ingrained HeLa is in standard scientific research. They know medical science would suffer greatly without their mother's cells, and they are proud of what their mother has given to scientific research. Legally, it would be difficult for them to succeed at any lawsuits, and none of the Lacks family is financially able or emotionally willing to put themselves through such an ordeal.

Sonny asks Johns Hopkins do something to honor his mother; this is exactly what Skloot aimed for in her 10 years of research for The Immortal Life of Henrietta Lacks. She hoped to protect patients from abuse and exploitation and to help the Lacks family get the healthcare and education they deserve. She also wanted to honor Henrietta Lacks for her contribution to science.

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