Abstract
HeLa cells are the cells the whole world knows about: they contributed to numerous medical studies and helped to create medications for serious diseases. Henrietta Lacks is the woman, from whom those cells were taken. However, many fewer people know about her. The cells were taken from Henrietta’s body without her consent, and for at least twenty years after her death, even her closest relatives were not aware of that. Based on Rebecca Skloot’s The Immortal Life of Henrietta Lacks, the paper discusses consent and privacy issues connected to the case.
The Immortal Life of Henrietta Lacks
Presently, the whole world knows about so-called HeLa cells that have been used in medical research during the last sixty years. Those helped to understand many diseases, including, for instance, sexually transmitted ones and contributed to the development of medications for treating such illnesses as leukemia, hemophilia, herpes, and Parkinson’s disease (Skloot, 2010). However, much fewer people know about Henrietta Lacks, the woman, from whom those cells were taken. Although HeLa led to the most significant changes in medicine of the last century, neither Henrietta nor her family gave their consent to the usage of cells; moreover, they did not receive any benefits, even though many studies were rather profitable.
The Issue of Consent
The first and probably the most important ethical issue Rebecca Skloot (2010) discusses in her book about Henrietta Lacks is the issue of consent. When Henrietta found out that she was ill, she went to Johns Hopkins Hospital in Baltimore, the only place in the area she lived in that provided free services to people “without regard to sex, age, or color” (Sharpe, 2010, p. 46). There was only one nuance: since doctors provided free services for blacks, they assumed that they had the right to use them for the research at the same time (Stump, 2014, p. 127). Dr. Gey, who treated Henrietta, took the cells from her body, and she was not even aware of that. Although that did not break any laws, Dr. Gey tried to disguise the woman’s identity, claiming that not Henrietta Lacks but Helen Lane (a fictional name) stood for HeLa, the name he gave to cells.
That is why not many people knew that HeLa cells were somehow connected to the woman named Henrietta Lacks. Although the cells were “omnipresent”, there was not much information about Henrietta by the 2000s: the majority of sources referred to Helen Lane, and the information about the cause and the time of the woman’s death was inaccurate (Skloot, 2010, p. 5). During almost sixty years, Henrietta’s closest relatives were aware neither of HeLa itself nor of the fact that some people were making a lot of money on the research. The Lacks did not get any profit either. While the researchers “created enormous wealth for many”, Henrietta’s family could not even afford health insurance (Sharpe, 2010, p. 46). Moreover, the members of the Lacks family were used for the research as well. Skloot (2010) says that while they believed that they were tested to see if they had the cancer Henrietta died from, the researchers used them to understand Henrietta’s cells better (p. 6).
The Issue of Privacy
In addition to the fact that nobody asked for Henrietta’s of her family’s consent, the researchers also violated privacy concerns. After several studies containing the genomic sequence of HeLa cells were published on the Internet and some of them even were publicly available, both the Lacks family and many researchers became worried about privacy issues (“Privacy and protection”, 2013). The genomic data is private, and can not be published without consent: it reveals the information impossible to find out in any other way, for example, the information about chronic family diseases that people do not want everybody to know about (Bobrow, 2013).
While many people demand the US National Institutes of Health to take care of privacy concerns regarding the Lacks family, it may already be too late for that. Presently, more than 1,300 gigabytes of genomic information of HeLa are presented on the Internet (“Privacy and protection”, 2013). Although such kind of information has already been taken out of public access, many people have seen and downloaded it. Even though it may be too late for the privacy protection of the Lacks family, it still must be done. The access to genomic data should be strictly limited and given only to a narrow circle of researchers.
Do People Own Their Tissues that Exist Outside Their Bodies?
With this in mind, another ethical issue arises. Should the Lacks have been provided with some part of the wealth created due to HeLa? Must the researchers tell an individual that his or her cells have been used for medical studies? Do people own or at least control their cells existing outside their bodies? Those are the last things Rebecca Skloot (2010) talks about in her book, and those are the first questions that probably every person asks after examining the case of Henrietta Lacks. Some people would consider that ironic, others would claim that it is unfair, but no regulation answers in the affirmative to any of the questions above (Skloot, 2010). Although some laws regulate the field of medical research (such as the Health Insurance Portability and Accountability Act (HIPAA), for example), none of them addresses ethical issues mentioned in this paper. Nevertheless, taught by the case of Henrietta Lacks, people become more and more aware of those issues. As Patricia Newcomb (2010) states, if people have been glad to participate in the research during the previous years, now they want to talk to their lawyers first.
References
Bobrow, M. (2013). Balancing privacy with public benefit. Nature, 500(7461), 123.
Newcomb P. (2010). Evolving fairness in research on human subjects. Journal of Child and Adolescent Psychiatric Nursing, 23(3), 123-124.
Privacy and protection in the genomic era. (2013). Nature Medicine, 19(9), 1073.
Sharpe, V. A. (2010). One Life, Many Stories. Hastings Center Report, 40(4), 46-47.
Skloot, R. (2010). The Immortal Life of Henrietta Lacks. New York, NY: Crown Publishers.
Stump, J. L. (2014). Henrietta Lacks and The HeLa Cell: Rights of Patients and Responsibilities of Medical Researchers. The History Teacher, 48(1), 127-180.