Informed Consent (Then/Now)
Before 1962, there were no laws, guidelines, or restrictions that doctors were required to follow when taking and using human cells. Ruth Faden, director of Johns Hopkins University, says, "It's a sad commentary on how the biomedical research community thought about research in the 50's, but it was not at all uncommon for physicians to conduct research on patients without their knowledge or consent" (Ruth Faden, 2001, Cells that Save Lives). The researchers were not trying to be immoral; they simply did not see anything wrong with taking tissue samples without consent. During that era, the researchers would forget about the patient once they had obtained a cell sample. When conducting experiments, they did not consider that the cells they were using came from actual people. Henrietta Lacks was not aware that a tissue sample had been taken from her cervix, but the turning point in medical ethics was when researchers started injecting patients with cancer cells without their consent, so they could better understand how cancer spreads. After that, the government institutionalized medical review boards and informed consent laws. By law, informed consent means that the patient understands that the study involves research, the purpose of the research, the duration of their participation, procedure, risks or discomforts, benefits, and alternative procedures. Consent can be given either written, or orally with a witness, but their decision must be voluntary and the consent must be authorized. Consent is required even if the tissue is de-identified, meaning no personal information is included.
Henrietta's Family
Henrietta was unaware that Dr. Gey took a tissue sample from her, and scientists who were making discoveries obviously benefitted financially from Henrietta's cells since they were making profit from their creations. So the Lacks family was enraged when they found out that people were profiting from the cells that Dr. Gey stole from their mother. The Lacks children felt that they owned the HeLa cells, and that the hospital did not have the right to experiment on the cells without their consent. They thought that they should at least get compensation for the scientific discoveries. This brings up the question of who owns the cells and whether or not the family should be making money.
The Lacks family first found out about HeLa cells in 1986 when the wife of Lawrence, Henrietta’s eldest son, had dinner with a scientist who worked with the cells. Lawrence’s wife told the scientist that Henrietta had been dead for over 25 years, so he could not have been working with her cells, but the scientist explained that the cells had been alive since Henrietta’s death. So Lawrence’s wife ran home to tell Lawrence that his mother was still alive. They proceeded to call Johns Hopkins Hospital themselves. The Lacks family had limited education, so they did not understand how their mother’s cells could still be alive even though Henrietta was dead. After they contacted Johns Hopkins Hospital, doctors took blood samples from the Lacks family. Johns Hopkins planned to use genetic information from their blood to identify cell lines that had possibly been contaminated by HeLa cells. However, the doctors told the Lacks family that Henrietta's cancer was hereditary, so the family thought they were being tested for cancer. Johns Hopkins did not tell the family what they were actually using the blood samples for. But the Lacks family never heard back from Johns Hopkins about the results of their "cancer test," so they stopped trying to contact the hospital about information. Deborah, Henrietta's daughter, finally grew curious and started to research HeLa cells on her own. Once she educated herself, she said, "I have always thought it was strange, if our mother cells done so much for medicine, how come her family can’t afford to see no doctors? Don’t make no sense. People got rich off my mother without us even knowin about them takin her cells, now we don’t get a dime" (Deborah Lacks, 2010, The Immortal Life).
Henrietta did not even receive the recognition she deserved for her cells until almost twenty years after her death. Gey named the tissue samples HeLa for the initial letters in Henrietta Lacks' name. But when the press was trying to find Henrietta's family, George Gey said that the cells came from a girl named Helen Lane to throw the media off track. Gey did not want the public to know that the most important cell culture in history had come from a black woman. Henrietta's real name was not released until the 1970's.
In addition to Henrietta's lack of consent and recognition, the scientists had sequenced the genome of HeLa cells and published them in a public database. This was a major invasion of the Lacks family's privacy. The Lacks family invested in a lawyer, and they were able to compromise with the researchers so that the genome can be shared with scientists by request, but only if the Lacks family gives permission.
The Lacks family first found out about HeLa cells in 1986 when the wife of Lawrence, Henrietta’s eldest son, had dinner with a scientist who worked with the cells. Lawrence’s wife told the scientist that Henrietta had been dead for over 25 years, so he could not have been working with her cells, but the scientist explained that the cells had been alive since Henrietta’s death. So Lawrence’s wife ran home to tell Lawrence that his mother was still alive. They proceeded to call Johns Hopkins Hospital themselves. The Lacks family had limited education, so they did not understand how their mother’s cells could still be alive even though Henrietta was dead. After they contacted Johns Hopkins Hospital, doctors took blood samples from the Lacks family. Johns Hopkins planned to use genetic information from their blood to identify cell lines that had possibly been contaminated by HeLa cells. However, the doctors told the Lacks family that Henrietta's cancer was hereditary, so the family thought they were being tested for cancer. Johns Hopkins did not tell the family what they were actually using the blood samples for. But the Lacks family never heard back from Johns Hopkins about the results of their "cancer test," so they stopped trying to contact the hospital about information. Deborah, Henrietta's daughter, finally grew curious and started to research HeLa cells on her own. Once she educated herself, she said, "I have always thought it was strange, if our mother cells done so much for medicine, how come her family can’t afford to see no doctors? Don’t make no sense. People got rich off my mother without us even knowin about them takin her cells, now we don’t get a dime" (Deborah Lacks, 2010, The Immortal Life).
Henrietta did not even receive the recognition she deserved for her cells until almost twenty years after her death. Gey named the tissue samples HeLa for the initial letters in Henrietta Lacks' name. But when the press was trying to find Henrietta's family, George Gey said that the cells came from a girl named Helen Lane to throw the media off track. Gey did not want the public to know that the most important cell culture in history had come from a black woman. Henrietta's real name was not released until the 1970's.
In addition to Henrietta's lack of consent and recognition, the scientists had sequenced the genome of HeLa cells and published them in a public database. This was a major invasion of the Lacks family's privacy. The Lacks family invested in a lawyer, and they were able to compromise with the researchers so that the genome can be shared with scientists by request, but only if the Lacks family gives permission.