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Patient Autonomy Often Forgotten in Research

One of the hallmarks of bioethics is respect for personal autonomy. Modern ethicists have stressed this virtue to a fault. Competent patients have a right to refuse any medical intervention, even if those interventions can enhance one’s quality of life or even extend one’s life.
 

Since the Nuremberg Code, researchers have been bound by a strict code of moral conduct designed to ensure the protection of research subjects. While Christian and secular ethicists have made great strides in protecting individuals from being the victims of immoral and oppressive medical research, we have fallen short once the research subject leaves the clinic or lab.

 

We have not ensured that leftover biological samples have not been used for additional research studies in opposition to the donor’s values or interest. Two historic cases have received attention in recent months: the story of Henrietta Lacks and the Harasupai Indians.

 

In 1950, Henrietta Lacks, an African-American mother of four, was admitted to John Hopkins. Before she died of cancer, researchers removed a rapidly growing tumor, which was later cultivated in order to produce the first immortal human cell line known as HeLa.

 

The HeLa cells later became vitally important in the study of cancer, Alzheimer’s and Parkinson’s. The cells were used to study the effect of radiation on the human body as well as being central to the mapping of the human genome. Lacks’ cells have been reproduced for more than 60 years and have been studied around the globe.

 

They were used in both the American and Russian space programs. Few areas of genetics have not been touched by these cells. The contributions that HeLa have made to science and medicine is unimaginable, but the story is not without controversy.

 

In her recent book, “The Immortal Life of Henrietta Lacks,” Rebecca Skloot documents the Lacks’ family story. For many decades, no one told Henrietta’s family about the research or the contributions that her cells made to science. Still to this date, no one has asked permission to use Henrietta’s cells. In addition, many of the medical therapies that had been developed from the study of the HeLa cells were beyond the financial reach of Henrietta’s husband and children.

 

While the Lacks’ story is beyond comprehension, it parallels another story. In 1989, representatives of the Havasupai tribe, which resides in a remote area of the Grand Canyon, approached researchers at Arizona State University about receiving help with an extremely high rate of Type 2 diabetes among the 650-plus tribe members.

 

In 2004, the Havasupai filed suit in federal court arguing that researchers went beyond the agreement to provide diabetes education, blood test for diabetes and testing for the study of genetic traits among the Havasupai. To the tribe’s displeasure, research was done on inbreeding, schizophrenia and the ancestral origin of the Havasupai people, all of which were in conflict with Havasupai values.

 

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The Arizona State University board of regents settled the suit on April 21. While the university agreed to return 200 blood samples, pay $700,000 and set up scholarships, there are still questions about how other people’s biological samples can and cannot be used in research studies. This case marks the first time a group of individuals has been compensated for the misuse of their DNA.

 

Cases like these are becoming common. One reason is that courts have ruled that patients do not have a legal property right to biological material that is taken during the course of proper medical care. The story of Henrietta Lacks illustrates this.

 

While similar practices help scientific progress, it creates moral problems, specifically issues associated with patient privacy and respect for individual autonomy. Researchers cannot guarantee that during the long history of a cell line that the individual’s private medical information can be protected.

 

The objective and repeatable nature of modern science causes researchers to want to get more information and repeat the experiment. This demands information about the subject. In addition, researchers who are following the logical path of study might use a subject’s data or biological material to study something that the subject finds religiously or morally objectionable.

 

While the protection of privacy and autonomy are important for bioethics, they are not the core problem of these cases. Like the Tuskegee syphilis study, these cases used minorities and marginalized people as research things. They failed to treat patients and research subjects as persons. They turned a person into an “it.”

 

Once research subjects become things, we have crossed a moral line. By devaluing another person’s humanity, we in turn lose our own humanity. The stories of Mrs. Lacks and the Harasupai started like the Tuskegee study. They wanted to help humanity, but once researchers lose sight of the patient’s or research subject’s humanity, research becomes destructive to the moral fabric of humanity.

 

So while we continue our journey into the genetic age, let us remember that each DNA report, each blood smear and each patient’s chart are a reflection of a real person who must not be forgotten and above all must be acknowledged as a valuable human being.

 

Monty M. Self is the oncology chaplain for the Baptist Health Medical Center Little Rock and an adjunct instruct of ethics at the University of Arkansas at Little Rock.