Abstract
This paper will discuss and focus on the past, current, and future ethical issues as it pertains to HeLa cells and how they were obtained. Some of the ethical issues of concern are: informed consent, privacy rights, and compensation. The process of obtaining these cells were taken after treatment was provided to the subject (Spigner, 2017). HeLa cells have been a great topic of debate of personal violation of a cancer patient. These cells have the ability to contaminate and invade other organisms and are the backbone for many vaccinations, medicines, and other medical observations. The HeLa cell line has been a huge commodity in a multi-million-dollar industry. Several reports and studies have been published in medical journals on the experiments and clinical trials using HeLa cells. Due to the lack of respect shown for the subject and her family proves how medical experimentation has historically been borne by those least able to protect themselves.
Keywords: HeLa cells, Henrietta Lacks, ethics, bioethics, ethical issues
Hela Cells Issues: Ethical or Not?
Throughout history experiments are conducted with primary concern of medical advancement neglecting the value of its subjects. The regulations set forth by the Food and Drug Administration (FDA), the International Conference of Harmonisation (ICH), and the Office for Human Research Protection (OHRP) sometimes do not provide a clear and concise view of patient rights when it comes to certain aspects of research done on individuals. The focus of this paper is on an individual who went in for medical treatment in Baltimore, Maryland, later dying leaving a grand legacy. There is great controversy over how these cells came about because they once were part of a human being that was not informed that they were being taken. According to Lacorte (2011), “Guidelines are put into place to assure the rights, safety, and wellbeing of patients in clinical trials are protected” (p.#5). To understand how and why the taking of these cells cause for an ethical debate will be discussed. This paper will provide patient information, how and why the cells were obtained, and the ethical issues that arose from the use of them.
Overview
Have you ever discovered later in life, several years later, that a family member left a legacy behind that helped many? This is the case of HeLa cells. Twenty years after the death of Henrietta Lacks her family members found out that she left a part of herself that has helped the world and is the cause of bringing millions to the medical industry. Henrietta Lacks cells (HeLa Cells) were obtained from her when she was receiving medical treatment from John Hopkins hospital in 1951. She was diagnosed with cervical cancer at the age of 31. But this was not like any cancer seen before. It did not react to the usual curable medical treatments or appear as cancer. The gynecologist, Howard W. Jones, conducted the examination on her and noticed the following irregularities: cancer results were negative, smooth glistening purple lesions on the cervix, and its rapid propagation inside and outside the body (Svalasatog & Martinelli, 2013). Due to this discovery, her cervical tissue samples were given to researchers working on the development of a tumor cell line without her knowledge or consent. These HeLa cells were sent to many research companies allowing groundbreaking discoveries and pharmaceutical developments. Her cells were contributed at ‘no cost’ to the research fields of virology, immunology, cancer research and genetics (Mauffrey, et al., 2016). Henrietta Lacks’ cells have been used to develop the polio vaccine, exposed to nuclear testing and toxins in space, and have assisted in further understanding of cancer, HIV/AIDS and cells in general. To this day they have been used to grow viruses and test anti-tumor medicines.
Ethical Issue Concerns for and Against HeLa Cell Use
The main ethical issues that are presented in the case of Henrietta Lacks are consent, privacy rights, and compensation. There are many arguments that have been presented for and against these issues.
Consent and Privacy
Henrietta Lacks was unaware that her cells were taken for further research and were provided to other research companies around the world. The argument that arises comes from the fact that if the identity of the individual is removed from clinical biospecimens taken, scientists don’t have to ask permission to use them (Skloot, 2015). This condition is not the case for Henrietta Lacks and her family. This is a well-known story due to her being named as the donor of these cells. This discovery has exposed unwanted attention and intrusion on her family, violating privacy. There is supposed to be anonymity to anyone’s cell line that should never trace back to the individual.
Argument against getting one’s consent starts with the concept that once a sample is taken from an individual is it no longer theirs (separation from the being). If this was not the case, informed consent would need to cover collection, storage, and future research (Biorepositories and Biospecimens Research Branch, 2016). In defining future research, it is impossible to define because it would not be known at the time of consent. The argument for this is to protect the participant from bodily harm if they are not informed about the use of their biospecimens. Since HeLa cells were so unique, samples of her children’s blood were sought after. They were told that were checking to see if they had the same cancer as their mother. But their true intention was to research their biospecimens without their consent.
Compensation
Several institutions have combined with biotechnology companies by supplying them with tissue and data. In turn, these companies will bank the tissue, collect data, and sell both to interested parties (Josefson, 2000). “HeLa cells or products of them can be purchased online from about $200 to $10,000 a vial” (Skloot, 2010). While her cells were being sold for profit, her family went without medical insurance. Henrietta Lacks has no dedicated medical wing, no recognition, and an unmarked grave.
At the time cells were taken from Henrietta Lacks there was no established practice of informing or obtaining consent from cell or tissue donors, nor were there any regulations on the use of cells in research. Since John Hopkins did not patent, sell, or profit from the discovery and distribution of HeLa cells; there is no compensation to made (McDaniels, 2017). However, a for profit model took place many years later after HeLa cells were mass produced at a rate of 6 trillion cells a week (Skloot, 2010).
Are There Ethical Issues Concerning HeLa Cells?
The possibility of tracing back tissue to its donor is doable due to genetic testing such as within the genome project. There are many revisions to the federal policy for protection of human subjects that are being proposed (Duhaime-Ross, 2016). The main proposal requires that scientists get consent for biospecimens retrieved from anyone. Since several revisions to how a sample is retrieved, used, and documented per updated rules and regulations is evidence that there are several issues when it comes to HeLa cells. The main premise is to honor privacy and confidentiality of participants while ensuring procedures conform to what was stated in the informed consent process (Hauser, Weinstein, Pool, & Cohen, 2010).
Conclusion
There are many ethical issues concerning HeLa Cells. Since the act on how HeLa cells were acquired, reproduced, used and sold have become a well-known, more rules and regulations are coming into place. I feel that monetary compensation should have been made to the family due to violation of the privacy act, because once it was known who the donor was and due to the use and reproduction of HeLa cells. In 2013, the National Institute of Health arranged an agreement with the Lack’s family that anyone who wants to have access to HeLa cells genome data would have to apply for and be granted permission (Caplan, 2013). Just imagine samples consisting of blood tests, biopsies, and surgeries have been taken from millions of Americans over the years are being used in research without their knowledge. If you were to find out that a sample belonging to you is being used, how would you feel? Another thing to consider is if samples are taken for free and are used to produce vaccines, cures, etc.… should these items be administered back to the world for free?