Rebecca Skloot in her debut science-based non-fiction deals with the journey of Henrietta Lacks, contributor to the famous He La cell line, to immortality. She also discusses the early stages of tissue culture, how the He La cells transformed the fields of cytology, cancer research, virology, genetics, chemotherapy through years of research, it’s implications in almost every area of medicine, tribulations endured her posterity and the ever-relevant topic of ethics in scientific research.
Early and mid 20 th century medicine had been so overshadowed by racism and permeated by the insidious and festering ideas of eugenicist theories that the essence of medical science had often been jettisoned by parochial, condescending physicians and researchers. As we navigate Henrietta’s biography, it is interesting to mull over the paradox of ‘benevolent deception’ touched upon by the author, the term itself being self-contradictory. Nevertheless, whether her gynecologist Dr. Jones and John Hopkins researchers and physicians had been benevolent enough not to add oil to the fire of cancer diagnosis by withholding it’s sinisterness from her thus aiding and abetting her death or whether they had been unwittingly naive and deceptive in misdiagnosing the type and extent of malignancy is debatable, given the incipiency of cancer management and research then. Much more contestable is the justifiability of procuring and harvesting Henrietta’s cells without the knowledge or permission of her near and dear, the diverse sentiments of which are dealt with in the epilogue, shedding light on the ethicality of tissue research, by platoons of pro and anti-tissue ownership rights crusaders.
The bigoted and invidious practices towards patients in the first half of the twentieth century had been much lofty as to tilt the equations of ethics and norms away from a soi-disant plebeian race to such an ignoble extent that the boundaries of conscience, ethics, and oaths were routinely transgressed in delivering care to the indigents. Yet, ethics has always been a thorn in the flesh of medical history. An example being the sensitive issue of euthanasia where ethical dilemma of decision making contravenes legality. Other downsides from the medical fraternity’s perspective are the liability on the physician to bring forth the burden of proof or the denial of the benefit of doubt from the public even though life-saving decisions need to be prioritized and executed in good faith.
In this context is the need for physicians to be proficient in juggling the priorities, treading the fine line of mental maths, a sort of acrobatics for which many of the noble jugglers are ill-trained, at best. Most of the medical schools do not cater to the topics of ethics and etiquettes in their curriculum or those that include them just makes a passing reference over a few sessions. The gravity of the topic rationalizes the incorporation of these as a distinct subject.
In Henrietta’s case, she inadvertently lent her hand and cells to medical innovations that turned out to be the elixir of life for many, in the process growing to a cause celebre in the history of tissue culture. Though medicine has come of age and the past specters of puritanical eugenic misadventures exorcized, ethics is still a hot-button issue, it’s complexity being shaped by determinants like subjectivity, intangibility, unfathomableness, religious, geographic and cultural influences.
Since the progression of science is far-fetched without pushing the limits, often the black and white facileness ought to be smudged to grey zones and hard and fastness tweaked to pliancy so as to fit into the tailor-made molds of necessity and enterprise in the course of research-based furtherance. While there are specific laws regarding human experimentation for research that sprouted from the Nuremberg trials and these are universal, regulations for tissue research is still somewhat murky and in its infancy.
That doesn’t mean, as a physician or researcher, one has done with it once the patient or subject initialed the consent form. Their accountability only begins there, in seeing to it that by pushing the limits they are never crossed, by holding on firmly to the pledge of ‘ Do No Harm’.