Think Before You Consent to Tissue Research

Samantha Edinberg '21

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I bet you’d feel cheated out of your money if you found out your doctor took some of your cells, used them for research, and made money from them without your knowledge, your consent, or compensation.

Many have researched or heard about the stories of Henrietta Lacks’s immortal cancer cells:

they were taken without her consent or knowledge, and her descendants paid the price after her death. The entire situation, including the repercussions of the scientists’ actions, are explained in the book by reporter Rebecca Skloot, The Immortal Life of Henrietta Lacks. Today, there is still a debate about whether the ends justify the means regarding human tissue property. Few laws have been passed to prevent the incident from happening again, and it is nearly impossible to enforce the laws that have been passed; it is essential that action is taken to increase the security of human cells.

For background, Lacks was an African American woman living in Baltimore during the 1950s who died of cervical cancer. During some of her cancer treatments, the doctors treating her took samples of the cancer cells without any consent. Those cells were used for important cancer research and led to the fabrication of polio, HIV, and HPV-18 vaccines. Unfortunately, her family members didn’t know about this until 20 years after Henrietta died, and they weren’t compensated for all the money that individuals and biotech companies had made off the HeLa cells (Skloot).

Whether doctors should be able to research and withhold someone else’s removed cells without consent or knowledge is still widely debated among the scientific community today, and little has been done to prevent another issue like the HeLa cell situation from repeating.

Within the overall topic, there are two central centers of ethical discussion: monetary compensation and informed consent. At first glance, it seems that the obvious solution would to be to require informed consent and compensation, but the debate is more complicated than one would think. Personally, it is my sincere belief that those who choose to contribute to the medical world deserve to be compensated fully for their donation. However, they should only do so with complete awareness about the risks and specific needs for their cells.

Regarding general consent, scientists believe that if they asked people to allow their cells to be used for research, the entire process of gaining possession of those cells would become unnecessarily difficult. Important factors, such as what tests the patient would allow and which cells they would allow for testing, would be difficult to keep track. Additionally, the patient would probably be able to sell their cells if they didn’t hand them to their doctors, so there is less incentive to assist the researchers.

If the doctors decided to take the cells without informed consent and made money off the research, the family will most likely find out and be angry that they received no compensation for their oblivious benefaction. On the other hand, scientists need these cells to improve the world’s overall health by creating vaccines, medicines, and pharmaceutical products.

One of the issues that scientists have with compensation is the subjective fact that when something is removed from one’s body, it is no longer their property. For it to be their property, they would need to refrain from signing the consent form that allows them to get something removed (Sim 1). If the cells that they want to be removed are malignant, and they don’t want to give it to the doctors, then they are stuck with those harmful cells; it could cost them their life.

Additionally, there are many factors to consider when it comes to compensation for the patient: how much they contributed, how much that contribution is worth, and they type of payment that the patient would like for the help they have provided. Uninformed citizens deserve to know what researchers are doing with their DNA and cells, and if their cells are revolutionary to the medical field, they deserve to be compensated for what they have given.

Some measures in certain countries have been taken, though. For example, Switzerland requires approval from the research ethics committee before identifiable human tissue samples are used for research or scientific purposes. Although the rules regarding informed consent have become less enforceable over the past few years, it is still required in most parts of Switzerland; it is an extensive debate among the Swiss scientific community (Colledge 3).

According to the American College of Physicians (ACP) Ethics Manual, one of the main parts of a doctor’s job is to educate and inform their patients and colleagues of necessary clinical skills or research results. Additionally, the manual expresses the need for approval from Institutional Review Boards relating to human research subjects, but this does not ensure that the researcher will uphold those ethics. It is difficult to enforce ethical research even though a scientist’s lack of integrity could easily result in punishment.

Fortunately, the ACP Manual also states that there should be benefits equal to the risks of experimentation for the patients, and those benefits should truly help the patient individually; if one of the benefits is the overall improvement of medical knowledge, there should be a more personal advantage for the subject. There is a requirement of informed consent of the research subjects, which is still incredibly difficult to enforce and punish when these measures are not taken.

The manual mentions the fact that patients should be compensated, but the rules regarding this are vague and nonspecific. Meanwhile, the ACP Ethics Manual claims that the physician conducting the research deserves compensation equal to the impacts of the research.

Most waivers now also include the possible risks that the patient should know about before receiving any treatment from the doctor or scientist (Allen 3). However, most patients do not read the waivers because they are long and sometimes difficult to understand. As a precaution, the patient should read the complete waiver and the doctor should ask if they have any questions regarding what they are allowing when they consent to their treatment, despite the possible hazards.

There should also be closer regulation on the ethical side of scientific research. There are still some accidents involving identifiable human tissue being taken and used without informed consent, and people are still growing angry about the morals of their doctors. Even though consequences have been listed, it would be advantageous for those consequences to be expressed as a cautionary tale to other doctors who were debating repeating this ethical mistake.

For the issue of compensation, the doctor and patient, who has agreed to allow their tissue to be used for research, should sit down and talk about the percentage of ownership each of the shareholders of the tissue will have and, if profits are made, how they will be divided amongst each of the involved persons. Though this issue may seem simple at a first glance, it is, in actuality, quite complicated because of all the separate factors that go into patients making a decision. Despite the complexities of the compensation issue, it would be worth the patient’s — as well as the researcher’s — time to go through each possible factor regarding payment and how each individual case should be handled.

Although some medical facilities and countries have attempted to prevent a repetition of the HeLa cell incident, there is still room for improvement. Individuals and families deserve to understand what they are doing for medical and scientific studies, and they deserve to be compensated for their contribution.

Works Cited

Allen, Monica J., et al. “Human Tissue Ownership and Use in Research: What Laboratorians and Researchers Should Know.” Clinical Chemistry, American Association for Clinical Chemistry, 1 Nov. 2010, http://clinchem.aaccjnls.org/content/56/11/1675#page.

Colledge, Flora, et al. “Consent Requirements for Research with Human Tissue: Swiss Ethics Committee Members Disagree.” BMC Medical Ethics, BioMed Central, 26 Nov. 2018, https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-018-0331-0.

Sim, Jolene. “Human Biospecimens: Ethics and Regulations.” Geneticist, Geneticist, 15 Nov. 2018, www.geneticistinc.com/blog/human-biospecimens-ethics-and-regulations.

Skloot, Rebecca. The Immortal Life of Henrietta Lacks. Broadway Books, 2011.