At the end of chapter 23 of The Immortal Life of Henrietta Lacks, Susan Hsu asks author Rebecca Skloot if she can draw still more blood from the Lacks family members in order to continue her research into their genetic makeup.
To understand the meaning of this request, we have to look back a little bit. Henrietta died of cancer in 1951, but researchers kept alive a cell line from her and used it in many different projects over the years. The cell line is called HeLa. But by 1973, researchers were concerned that the cell line was becoming contaminated. They wanted to know for sure which cells originated from Henrietta, and to find that out, they had to collect DNA from her descendants and examine the genetic markers.
Lead geneticist Victor McKusick sent Susan Hsu to draw blood from the Lacks family. Hsu didn't speak English very well, and the Lacks family members didn't understand exactly what she wanted to do or why. They were actually under the impression that they were going to be tested for cancer, and this scared them, especially Henrietta's daughter, Deborah, who was terrified of dying of cancer like her mother.
The family agreed to the blood draw, but they never signed an informed consent form, because in those days, such was not needed for the collection of blood or tissue. A law has since been passed requiring informed consent. But for years, the Lacks family was under the mistaken impression that they were being tested for cancer rather than examined for genetic markers.
Rebecca Skloot talks to Susan Hsu during her research for the book, and Hsu is shocked that the Lacks family members never understood what was really going on. She always thought they did. She isn't particularly remorseful about the misunderstanding, though. Clearly her focus is still very much on her research rather than on the family's fear and distress. She tells Skloot to express how grateful she is for Henrietta and her cell line, but then, she rather tactlessly asks for more blood from the family.
It seems that Hsu's research is the most important thing to her. The Lacks family members seem to be merely research subjects rather than human beings with emotions and anxieties. Hsu assumes they understand, but she doesn't bother to make sure the family knows the details. They seem to be merely a side note to her studies, and this is unfortunate.
Skloot includes this incident to show the attitude of some researchers who are so completely absorbed by their projects that they forget there are human beings involved in them, human beings with feelings and fears. This is a major problem in scientific research and one that should be addressed so that human beings can always be first rather than projects.