Rebecca Skloot’s book The Immortal Life of HEnrietta LAcks tells the story of the Lacks family and how their mother’s cells changed medical research. Skloot’s book fills in details about Henrietta’s life and the cervical cancer that provided science with the first cell line, HeLa.
Without her knowledge, Henrietta Lacks’ (HeLa) cells were collected and used for cervical cancer research. These immortalized cells – reproducing still today – would eventually be used to generate the first-ever human cell line and distributed world-wide for use in millions of experiments benefiting human health from the polio vaccine to gene mapping.
As a graduate student in the Life Sciences and lover of Biology, I believe that the role of cell culture and tissue donation should be honored for its impact on medical and basic science. I frequently use cell lines and patient tissues for my thesis. The research that I do may be used to develop new tumor therapies. If and when this occurs, I will be delighted that my ideas and data was useful could benefit persons besides myself. One of the things Skloot’s book does very well is to thoughtfully tie together the complicated subjects of ethics and science; especially when addressing a patient’s informed consent for human tissues in research.
The process of science can be serendipitous. New discoveries can prompt studies that require tissue samples. Because of this, using banked tissues, rather than collecting individual samples for each study, tremendously benefits medical research. Here, a single patient’s tissues can be a part of multiple studies rather than only one.
However, this process does not work if the donor requires that their tissues can only be used for a particular study. Currently, donors choose whether their tissues can be used for research but not necessarily specific studies or experiments that may use their material in the future. Some donors have expressed that they want to itemize uses for their tissues for personal and political reasons and may stop consenting until this request is met.
This would hinder scientific discovery, but also brings to the fore a key problem with medical research; that the scientific community simply can’t anticipate all the possible future uses for tissues and list these in general lab studies for practical review. Designing a system to catalog all the possible research topics for human tissue is impossible.
For my thesis, I ask patients to give consent to use their tissues for research, and though the current system may need remodeling, I agree that people should be informed and give consent to their use. The public could learn from the Lacks family’s attitude by recognizing Henrietta Lacks’ contribution to science and being glad that science moved forward without Henrietta’s personal acknowledgement until decades later.
However, it scares me that a person may boycott consent tissue donation purely because of political or personal beliefs. Boycotting consent greatly hinders both medical and basic scientific research; ultimately interfering with the quality of patient care. Though people may feel strongly about certain medical practices (i.e. abortion or stem cells), this is no reason to hinder scientific discovery. The public has to understand that research is continuous and requires human tissues for medical applications.