Lessons from the UBRP Ethics Retreat -- An Exploration of Ethics in Research

The picture we’re all staring at is undoubtedly beautiful. No one can tear their eyes away from the vivid, fluorescent colors of purple, red and orange that make up a cross-section of a zebrafish’s head. Dr. Nicholas Delamere, a professor of Physiology at the University of Arizona, explains what we’re looking at: these vibrant hues map out the key proteins involved in Leber congenital amaurosis (LCA), a disease of the eye that presents itself at birth and renders children extremely visually impaired or blind. There are no known cures. 

The zebrafish cross-section is fascinating to look at—to think our understanding of biology has progressed to the point where we can identify infinitesimally small molecules and understand their function amongst millions of others is awe-inspiring. That this zebrafish, dead under the microscope, was essential to advancing our knowledge of LCA and the search for a cure, seems grotesque at first, but acceptable when considering the alternative: we would not know half as much about LCA without this organism’s sacrifice. 

“Now,” Dr. Delamere says, “Would you subject puppies to this zebrafish’s plight?” 

Silence. We were so sure about the zebrafish; yes, it is of course sad to inflict such pain on the fish, but in the end, the good outweighs the bad. 

But puppies? Not even one, but many? How could we easily say yes, even knowing that a dog study may be the only way to help hundreds of kids with LCA? How could we inflict such pain on a puppy, who would happily wag its tail when it sees us and bound over to say hi, whose only crime was having eyes too similar to humans? 

During this ethics retreat we tackled all sorts of situations: painful decisions, like this one, where necessary evils were the only options. Easier decisions where the moral choice should have been obvious, but history has shown that was unfortunately not the case. Other decisions where we were all convinced that we were right, only to realize that we had overlooked something. The UBRP Ethics Retreat was two days of learning and thinking and reflection, and hopefully, we all emerged not only as better scientists but also as more considerate and empathetic people. 

We spent much of our time at the ethics retreat attending talks given by U of A faculty and staff whose work heavily involved grappling with various aspects of bioethics. We heard four talks in total, the first of which was titled ‘Is Healthcare a Human Right?’ and was given by Dr. Gail Burd, a distinguished professor of Molecular & Cellular Biology at the University of Arizona. 

At the beginning of the talk, each of us was handed a packet of paper, each page illustrating a different aspect of the American healthcare system and/or the various health outcomes of the American population across the 50 states—how the incidence of various types of cancer varied from state to state, the frequency with which individuals carried health insurance across different states, in what states abortion is still legal, etc. We were encouraged to pick one or two states and analyze their healthcare policies as well as their health outcome statistics, attempt to draw correlative conclusions using the data, and perhaps begin predicting the relationships between healthcare status and outcome. We very quickly realized that, across the US, an extremely wide range of both policy and outcome could be observed. Some states exhibited very high rates of individual carriage of health insurance, as well as very low rates of death caused by life-threatening illness, while others showed quite the opposite in both respects. Because US healthcare policies are largely left up to each state to legislate, all 50 states have a slightly different flavor, so to speak, of health treatments and outcomes—some good, others highly concerning. 

In addition to learning about the current state of the US healthcare system, Dr. Burd also described to us the healthcare systems of other developed countries. In the UK, for example, everyone in the country is given access to government-funded free medical care, making it possible for all citizens to receive the treatment they need, regardless of their financial status. In France, all citizens carry an insurance card, the Carte Vitale, which enables them to receive universal healthcare provided by the government. The Taiwanese government, seeing the positive effect free universal healthcare could have on a country and its citizens, developed its own unique policy, borrowing characteristics of various healthcare systems from around the world. We were then left to contemplate—why has the US not done the same? Although the US government is more than able to afford the development and maintenance of such a system, it has continuously failed to do so. Dr. Burd opened our eyes to the insanity of our current system, one which caters exclusively to the well-being of the upper classes and severely restricts the ability of individuals with less financial stability to receive a basic human right— necessary medical care. “Is this a moral issue? An ethical one?” she asked us. We were invited to take a good look at ourselves and our country—was it ethical for this glaring form of discrimination to take place, when a much more equitable and compassionate alternative was well within our grasp? The end of the talk was particularly powerful and action-provoking: “Your generation—you’re the ones who are going to fix this,” said Dr. Burd. After the talk, our answer to the question we were presented with in the beginning—is healthcare a human right? —was decidedly a ‘yes.’ Universal healthcare is not an unattainable nor fanciful hope, but a reality that we can and must work to create. 

The second talk we attended was by Dr. Salma Patel, MD, assistant professor of Medicine at the university. While Dr. Burd’s discussion had us consider the human population at large, Dr. Patel’s focused on the individual. As both a physician and medical researcher, her work is intimately involved in ensuring that the highest ethical treatment is provided to patients, especially those undergoing novel or experimental procedures. While at first sounding like an easy task (simply being decent to those under your care certainly sounds much less complicated than arranging free universal healthcare in a dizzyingly complex and obstinate political sphere), one quickly begins to realize the difficult-to-traverse gray areas in this field. For example, if a patient eligible for a risky but potentially life-saving novel treatment is a minor whose parents are not native English speakers, how does the physician and/or researcher go about administering ethical, informed, and consensual treatment? We learned that to aid in the navigation of such a situation (and others like it), researchers employ the Belmont Principles, which are widely considered to be the national gold standard for ensuring that researchers maintain ethical treatment during human clinical trials. The principles go as follows: 1) Respect for persons: researchers must ensure that the patient fully understands and consents to all components of a trial before treatment is begun; 2) Beneficence: Also known as the principle of "do no harm", research should maximize benefit potential and minimize risk; and 3) Justice: Researchers must ensure that their selection of individuals for their trials is not exploitative of marginalized/historically mistreated groups. 

We were then invited to analyze and discuss several real-world case studies in which the Belmont principles were potentially violated. One of the cases stood out to us as particularly difficult to navigate—we were presented with the following story: a man being treated for a heart condition falls unconscious. His limbs turn white and then blue, a sign of complete heart failure. Whether to attempt resuscitation was not specified by the man beforehand, and he has no family to contact. We were then asked: would it be the more ethical choice to attempt to save the man’s life, or to allow him to die? Dr. Patel later revealed to us that this was something she personally had to face. Though an extremely difficult situation, she, in the end, attempted resuscitation, which was successful and received well by the patient. It very well could have gone the other way, however, she explained. When faced with such ethical grey zones, the physician can only use their own best judgment and perception of what would most benefit the patient and be willing to accept the consequences of their decisions regardless of the outcome. Even with an ethical guide like the Belmont Principles, there are not always defined rules for every case. 

The same holds true in animal studies, as demonstrated earlier with the zebrafish case. Dr. Delamere’s talk was the most interactive of them all—he gave us many ethical conundrums that we had to decide upon and justify with our peers. We had to choose what animals we would use for an experiment (zebrafish, mice, bunnies, monkeys, etc.), decide whether we’d rather humans risk a COVID infection to care for experimental dogs, euthanize the dogs, or give them away, balance out statistical significance with lives experimented with, etc. We learned that our attachments to certain animals influence the (often far-reaching) decisions we make about them; for instance, it feels emotionally easier to experiment on 50 mice rather than 50 dogs. That’s not necessarily a bad thing—our ability to empathize with these animals has led to rules and regulations on how to treat experimental animals well and subject them to the least amount of suffering possible, though it does make it difficult to tell whether our decisions are based in rationality or cognitive bias. 

The need for animal experimentation in science did not make these decisions any easier on our psyches. At first, the general mood in the room was reluctance to hurt these animals, no matter how small and unlike us they are.  When Dr. Delamere posed this question for us, however: “If you were a parent of a child with LCA, would you rather have a cure trialed with zebrafish or monkeys?”, the other end of the argument also became clear. As harsh as it sounded, there were few of us in the room who would put a monkey’s life before a human’s. The great dilemma, we eventually discovered, is not quite whether animal studies are ethical, but how to make them more ethical and live with the decisions we make. We should design experiments that minimize the amount of necessary harm done to animals as much as possible, and should always remember that all life, no matter how small, is sacred. Perhaps mathematical models are approaching the point where we don’t need animal studies anymore, but until then, it is ever important to be mindful and understand the gravity of the lives given during animal testing. 

While the first few talks used hypotheticals, the final talk concerned its opposite—history. We focused on a subject both essential and often ignored due to the shameful light it sheds on the scientific community: the exploitation of Indigenous peoples in science. We often hear scientists wax poetic about the greater good of their work; however, even just a brief glance at history will tell you that’s not always the case, especially considering the concentration of privileged people in science. During this talk, given by Agnes Attakai, Director of Health Disparities Outreach and Prevention Education, we learned about ASU and UofA’s injustice to the Havasupai tribe. ASU researchers, led by Dr. Therese Markow, collected blood samples, considered to hold significant spiritual meaning by the Havasupai, and told them that the blood would solely be used for diabetes research to help the tribe. Then, in a shocking breach of trust, the researchers used the Havasupai tribe’s blood for other research purposes, such as tracing their genetic lineage, without obtaining consent or even informing the tribe. Even after charges were filed against her, Dr. Markow and her supporters still didn’t seem to grasp the gravity of what she did, which is symptomatic of the lack of diversity and empathy in the scientific community. 

Unfortunately, this is only the tip of the iceberg when it comes to harm done to Indigenous peoples by the scientific community. We learned about the resounding impacts of this—the injury from injustice does not heal quickly, but festers, unhealed, for generations. Continuous failings at transparency and decency have understandably caused some Indigenous communities to be wary of science. Dr. Markow and her supporters epitomize a branch of the scientific community who don’t realize that science does not exist in a vacuum; there are always real consequences and real impacts on real people. It is up to us, the future generations of scientists, to remedy this; to respect the communities we work with, and always strive to conduct science with respect and reciprocity. 

After the talks, it was time to explore! As night descended on our first day at the Biosphere, we began to gaze up at the sky, excited to see the heavens unobstructed by the light pollution normally smothering our view. We were not disappointed. During the nighttime, the Biosphere’s sky is a sight to behold—hundreds of pinpricks of light embellish the sky, and wisps of the Milky Way wind through the stars. We excitedly pointed out the Big and Little Dipper and Orion’s Belt (that’s all we knew, unfortunately; we are biology nerds, not astronomers). It was a magical end to the first night at the Biosphere—after spending a day trying to make sense of the science here on Earth, looking up at the marvels that science had already created long before we came into existence brought us a fresh perspective. 

The next day, the moment we’d all been waiting for had arrived. Dr. Kevin Bonine, Director of Education and Outreach at Biosphere 2, took us on an exclusive, one-of-a-kind tour into the Biosphere. We marveled at the lush greens of the rainforest, salivated over the papaya hanging on trees in the mangroves, and admired the jewel-toned green of the 700,000 gallons of water making up the human-constructed ocean biome. Throughout it all, we couldn’t help but put ourselves in the Biospherians’ shoes: could we live for 2 years alone in the Biosphere, growing and making everything we needed from scratch, with the sweetest food available being mere bananas (they were rationed…yikes)? After we visited all the habitats, Dr. Bonine took us someplace very special—the Lungs of the biosphere, which were large, echoing rooms constructed to expand and contract to keep the air pressure in the biosphere stable through its daily temperature fluctuations (think PV=nRT!). 

Over the course of our two days at Biosphere 2, we discussed quite a wide array of topics, many of which are relevant to us both now and as we progress through our careers as scientists and researchers. What we learned during our time at the ethics retreat equipped us with a foundation of knowledge, from which we may better guide ourselves through the seemingly labyrinthine, though important and unavoidable, field of bioethics. We feel indebted to the speakers for graciously imparting their expertise unto us. If there is one single overarching lesson we took from the ethics retreat, it was this: biological research does not exist in isolation. It is inextricably tied to all other aspects of human life—culture, government, emotion, intuition; the state of the people doing research, as well as the state of the people at the receiving end of the fruits of research. The nature of any research is only as good as the person behind the bench—their intentions, their biases, how much care they put into their work—it all matters immensely. Scientific license put in the wrong hands can be catastrophic, but in the right hands can put forth much good into the world. Even as undergraduate researchers, the ethics retreat allowed us to realize the potential that we have to effect positive change on the world with our work; the contribution we can all make as scientists in ensuring that our work truly helps and doesn’t create harm.