Scientific experiments are performed as a way for humans to understand more about the world in which they live and themselves. However, the thirst for such knowledge has often resulted in ignoring the ethical implications of such experiments and thus has resulted in some of the worst human rights violations. In 1973 the Senate Subcommittee on Health held a series of hearings in an attempt to tackle the conundrum of risk versus reward in medicine and human experimentation. Much knowledge has been reaped from these experiments that have resulted in medicine being able to improve the quality and lifespan of many people’s lives.
However, a lot of this knowledge has been gained through the sacrifices of others and sometimes these sacrifices were not made willingly. Thirty years later, Kazuo Ishiguro’s Never Let Me Go attempts to tackle the same conundrum by posing a question to readers that all experimenters must ask themselves before any experiment: does the reward truly outweigh the risk? The answer can be found in ethics. Ethics in human experimentation can sound like a bit of an oxymoron, thanks to various scandals in such experiments on shaky moral ground and Hollywood’s portrayal.
While animal test subjects with similar body structures to humans have also led to great knowledge, human test subjects are truly the best way to gain knowledge. However, as in all scientific experiments, the costs must be weighed against the benefits. In Psychology, a risk/reward ratio is calculated for every experiment before it is presented to the Institutional Review Board for approval. In Medicine, the CDC must approve experiments featuring human test subjects and these experiments must prove that their plan falls in line with the CDC’s ethical codes.
Furthermore, psychology and medicine both adhere to their own set of ethical rules including the APA Code of Ethics for psychology and the Hippocratic Oath for medicine. Psychology seeks to do as little harm as possible, while medicine strives to do no harm. Another crucial component to ensuring the ethics of an experiment involving human test subjects is the concept of informed consent, something that is vaguely touched upon in Never Let Me Go. Kathy and her friends aren’t told that they’re clones with the sole purpose of donating vital organs, but they do seem to be aware that they are clones.
While informed consent generally applies only to experiments, the importance of informing people of their circumstances especially as it applies to their health is an important one. Miss Lucy seems to understand this as she breaks the rules, resulting in her removal from the school, and tells her students the truth. The Senate hearings also brought up the importance of informed consent, particularly with the disturbing Tuskegee Syphilis Study in which medical treatment was deliberately withheld and participants were purposefully misled.
Human experimentation can be a wealthy source of knowledge that can solve some of the problems plaguing modern medical treatment, but it must be done in the most ethically sound manner possible. One such problem modern medical treatment faces is a shortage of organs. The current legal system for organ transplants is based upon the United Network for Organ Sharing or UNOS, which provides organs to patients in the United States. However, the number of healthy viable organs needed far outweighs the number that are available at any given time.
According to data posted on the UNOS website someone is added to the national transplant waiting list every ten minutes, the total number of people on the waiting list in need of lifesaving organ transplant is 121,049, and approximately 22 people die each day while waiting for a transplant. While the idea of creating clones to provide organs is both scientifically implausible and morally questionable, the dystopian society in Never Let Me Go seems to have solved their problem of organ shortage with this method.
The novel does a wonderful job of addressing the moral issues surrounding organ transplants focusing less on the narrative of the transplant recipient and more on the sacrifices made by the donor. Kathy’s plight also serves to start a discussion on another facet of modern medicine in society by addressing the concept of control over one’s body. Medicine is the art of healing bodies, yet all too often the social concept of privilege finds its way in to impact medical decisions for certain groups of people. There are three big types of privilege that affect medical decisions and the control people have over their bodies and healthcare.
These types of privilege are white privilege, male privilege, and wealthy privilege but they all intertwine. The Tuskegee Syphilis Study took advantage of white privilege by manipulating impoverished, black men suffering from syphilis because they knew that the rights of black men were limited. The plight of black people suffering from white privilege did not end with the dissolution of the study and continues to this day.
White privilege in medicine starts at a young age, with black pregnant women facing a 43% higher risk of going nto pre-term labor than white women (Martin, Kung, Mathews, Hoyert, Strobino, Guyer, and Sutton, 2008). Additionally, black mothers are less likely to breastfeed despite guidelines suggesting to do so as a result of a lack of education about health benefits and support for new mothers. Black people do not fare better in childhood and adulthood with statistics showing they are more likely to suffer from asthma, obesity, poor oral health, diabetes, HIV, breast cancer, stroke, and hypertension at a higher rate than white people.
White privilege extends even to the way patients are treated with a study in the New England Journal of Medicine showing that black women were treated the worst and were the least likely to benefit from being recommended to seek follow-up care (Schulman, Berlin, Harless, Kerner, Sistrunk, Gersh, Dube, Taleghani, Burke, Williams, Eisenberg, and Escarce, 1999). Male privilege has also found its way in to medicine as women are not actually in control of their bodies or their healthcare.
This is illustrated best in a mock ad for birth control from the popular sketch comedy show Inside Amy Schumer. The parody takes the typical “ask your doctor if birth control is right for you” portion of real ads and stretches it out so that the girl in the commercial asks her doctor and every male in her life all the way up to the supreme court until she finally can get her birth control from the pharmacist, only to discover she’ll have to do the exact same thing the next month.
While this is not the reality for women who take birth control, it highlights the sexist double standard in medical treatment because while women have to jump through hoops to make decisions about their bodies including getting on birth control and having abortions, men face little to no opposition when they make medical decisions such as getting on Viagra. Additionally, insurance coverage of such medical treatments is plagued by male privilege as many insurance plans cover Viagra but they do not cover the pill.
Wealthy privilege also impacts medical care and restricts impoverished people from making decisions about their bodies and healthcare. Wealthy people often have health insurance that covers more treatments and medications, allowing them to get lifesaving surgeries as well as plastic surgery to keep themselves young and cosmetically fit. Impoverished people are often reliant upon poorly funded clinics to stay healthy and if they are able to afford health insurance, it generally covers only the bare minimum and some lifesaving treatments have to be sacrificed ue to cost. While the novel does not specifically cover any of these privileges, it does highlight the unethical nature of actively preventing a specific group of people from being able to make their own medical decisions. Technological advances can be a bit of a Pandora’s box with innovations in technology bringing about ways to improve lives while also offering up new methods to hurt others, and medicine is not immune from this conundrum.
Genetic sequencing has improved greatly in the last decade to provide people with access to their genome. This sequencing can be used to guide doctors to implement tailored therapeutic interventions to increase the quality of life in patients, but it also holds the possibility of being used for the purpose of eugenics. Eugenicists can take advantage of this information by using genome sequencing to determine who is genetically fit to reproduce and who is not, a practice that is ethically wrong and dangerous to human dignity.
Pacemakers and other implanted medical devices also present a conundrum as they are susceptible to hacking, a flaw taken advantage of by the wrong person could have fatal results. The flaws of technological advances in medicine is the basis of the society in the novel, where science has advanced to a point where healthy human clones have been successfully made to provide organ donations. However, society does not seem to believe that these clones are actually human and they are treated as nothing more than temporary organ storage machines.
This society feels no humanity towards these clones, even though they are living, breathing beings. As technology continues to advance and grow, it is important for society to always take ethics into consideration. When people lose their humanity, they have lost all. Ethics in medicine is a crucial component to ensuring that medicine is used to improve the lives of everyone in the least harmful way possible. Never Let Me Go illustrates this point by presenting the dangers of foregoing ethics in favor of improving the lives of a select group of people.
The Senate hearings on human experimentation brought to light the egregious ways in which ethics were sacrificed for progress in the past and the harmful effects it had on so many people. The world is in age where so many technological advances in health are on the horizon, but so many terrible unintended consequences also lurk around the corner. Thus, it is important for everyone to have a firm foundation in ethics and a respect for the humanity that makes them human.
