ARESTY RUTGERS UNDERGRADUATE RESEARCH JOURNAL, VOLUME I, ISSUE III This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License. ETHICAL IMPLICATIONS OF BIOHACKING AS ACTIVISM: DEMOCRATIZED HEALTH CARE, DANGER, OR WHAT? JULIA ZHENG ✵ ABSTRACT Biohacking refers to optimizing one’s body through modifying biology. In the 20th century, do-it- yourself (DIY) biology emerged as a type of biohack- ing involving biotechnology. Current high- healthcare costs promote DIY biology insulin and EpiPens as ways to challenge norms in healthcare, thus serving as forms of activism. Biohacked insulin is part of the #WEARENOTWAITING movement to sup- port improved treatment of Type 1 diabetes, where- as biohacked EpiPens allow people to make lifesav- ing autoinjectors at low costs. Social media acts as a catalyst and aids in the spread of insulin and EpiPen biohacking as activism. In 1979, Principles of Bio- medical Ethics by Beauchamp and Childress pro- posed four principles that continue to guide deci- sion-making in clinical medicine: beneficence, non- maleficence, autonomy, and justice. This paper ap- plies these principles to explore whether the bene- fits of performing DIY biology outweigh the potential health risks. Examining biohacking with a biomedical ethics frame, as outlined by Beauchamp and Chil- dress, reveals that biohacking acts as a response to current issues but cannot serve as a solution in its current form. However, biohacking can grant pa- tients more power in their relationship with the healthcare system, therefore lessening the domi- nance of formal institutions. Out of the four princi- ples, autonomy applies most differently when re- garding biohacking than traditional medicine. Ac- cordingly, a model of ethics for biohacking, such as of Beauchamp and Childress’ with the autonomy al- tered to acknowledge the additional implications of biohacking, should be developed in the future. 1 INTRODUCTION Recent rising healthcare costs and lack of in- surance have jeopardized access to health care for many Americans. This problem has sparked a move- ment towards open-source medicine, leading to in- creased interest in biohacking.[5] Biohacking is a broad term that refers to modifying one’s biology in an informal setting. Examples of biohacking range from dieting to implanting computer chips in one’s body. Specifically, do-it-yourself (DIY) biology is a type of biohacking that expands access to individu- als, communities, and small organizations studying biology with the same biotechnology as formal re- search institutions. Biohacking has made biotechnol- ogy financially and intellectually accessible to those without proper training, who often work out of make- shift labs in their garages or kitchens. Pharmaceutical companies and the lucrative nature of the healthcare system have driven many Americans to take the issue into their own hands, forcing people to use DIY biol- ogy to synthesize their medicines or conduct genetic testing. Biohacking serves as an act of activism (which can be defined as campaigning to bring about change) against rising healthcare costs, providing otherwise powerless individuals a voice against the unfair practices of the healthcare system. Biohacking responds to high healthcare costs, but its viability from the perspective of biomedical ethics must be analyzed when determining if it can be a real solution to current issues. Applying a biomedical ethics framework, like Beauchamp and Childress’ prominent Principles of Biomedical Ethics, serves as a valuable context to explore the ethical implications of biohacking activ- ism. The authors indicate four principles of biomed- ical ethics: beneficence, nonmaleficence, autonomy, and justice. These principles were first proposed in 1979 and are currently used widely by medical pro- ARESTY RUTGERS UNDERGRADUATE RESEARCH JOURNAL, VOLUME I, ISSUE III fessionals and ethical review boards when making healthcare decisions. Beneficence refers to health care providers preventing harm and working to ben- efit the patient. Nonmaleficence holds healthcare professionals to a “standard of due care…taking suf- ficient and appropriate care to avoid causing harm, as the circumstances demand of a reasonable and prudent person,” in which “reasonable” refers to one who approaches a situation with caution and sensi- bly takes action[1]. Nonmaleficence requires medical professionals to prevent harming patients purpose- fully or negligently. Autonomy allows patients the ability to make informed, voluntary decisions without controlling influences. Justice in healthcare refers to the equal treatment of patients, regardless of money, age, or race. Regarding biohacking, how- ever, one must note that the biohacker is the patient and the medical professional, further complicating this issue. This paper will apply the bioethical frame- work of Beauchamp and Childress to biohacked in- sulin and EpiPens to weigh the benefits and risks of biohacking as a potential solution to high costs im- posed by pharmaceutical companies. First, it will dis- cuss the ethical implications of biohacking activism concerning insulin for type 1 diabetes. Next, it will examine the DIY EpiPen as a form of biohacking ac- tivism for those with allergies. Then, it will compare autonomy in its traditional sense with autonomy in biomedical ethics. Continuing the discussion of au- tonomy, it will further explore its applications and nu- ances regarding parents and children before con- cluding with a proposed plan to promote future eth- ical activity. 2 INSULIN ACTIVISM For patients with type 1 diabetes and those with type 2 diabetes who do not produce enough insulin, insulin therapy is necessary to keep blood sugar within a target range, prevent hypoglycemia and ketoacidosis, as well as ultimately sustain and enhance life. However, continuously rising insulin costs have presented a barrier to patients with dia- betes from receiving this medication. In the past twenty years, the price of insulin has increased from $21 per vial to $332 per vial in 2019, a more than 1000% increase. Dr. S. Vincent Rajkumar of the Mayo Clinic comments on this issue: “There is limited inno- vation when it comes to insulin; the more pressing need is affordability.”[12] Gallegos agrees with Rajku- mar that these high costs present a concern and un- derscores instances of people “rationing treatments, using expired products, fasting, and even intention- ally inducing diabetic ketoacidosis in order to obtain insulin from hospital emergency rooms.”[5] These ex- amples show that current healthcare conditions par- adoxically push people to harm themselves in order to save their own lives. Beauchamp and Childress would view the issue presented by Rajkumar and Gallegos as a violation of the principle of justice, par- ticularly distributive justice.[1] Rajkumar agrees, stat- ing that “Insulin pricing in the United States is the consequence of the exact opposite of a free market: extended monopoly on a lifesaving product in which prices can be increased at will…”[12] All four of these authors would argue that pharmaceutical compa- nies behave unethically regarding the distribution of insulin, creating an environment that pushes people to engage in biohacking as activism. Although insulin is not currently successfully synthesized using DIY biology, multiple organiza- tions conduct experiments to move towards this goal. For instance, The Open Insulin Project is a col- laboration of community biolabs worldwide that is currently attempting to produce insulin more cheaply than pharmaceutical companies. Once widespread, biohacked insulin could act as a life-sav- ing alternative for patients who cannot afford tradi- tional insulin. One main difference between formally produced and biohacked insulin is the rigorous test- ing a new drug must undergo in the United States, which “cost[s] between $30 and $250 million.” Thus, regulatory costs create a major barrier to entry for potential biosimilar producers and necessitate high drug prices to recoup investments spent on clinical trials”.[5] Biohacked insulin can avoid extensive test- ing, but this lack of assurance results in risks of unin- tentional poisoning for consumers. The lack of re- quired training for people to perform DIY biology also presents a risk. For instance, a biohacker work- ing for the Open Insulin Project was described as “frequently check[ing] the instructions on his ARESTY RUTGERS UNDERGRADUATE RESEARCH JOURNAL, VOLUME I, ISSUE III smartphone, because he is not too familiar with this kind of work yet…[he] has a major in business eco- nomics.”[10] This behavior implies an unfamiliarity with the science, further highlighting the dangers of being unvetted and underprepared. Gallegos and Osterath demonstrate the trade-off between safety and financial accessibility that biohackers must con- sider. The problematic situation that people with di- abetes find themselves in jeopardizes their ability to obtain a life-sustaining medication, resulting in des- peration and fear of death that enables immense psychological discomfort. This situation prevents bi- ohackers from acting as “reasonable” people and thus fully demonstrating nonmaleficence. Further- more, trained professional workers in healthcare ful- fill the principle of nonmaleficence by relying on their extensive training, following strict protocols, and practicing wise judgment to ensure nonmalefi- cence for their patients; this also includes obtaining medications and supplies from a trusted, formal source such as a pharmaceutical company. One could also argue that Beauchamp and Childress’ “due care” refers to taking the proper, rather than bi- ohacked, medication. Due to the lack of testing and regulation of DIY insulin in its current state, people cannot ensure the same degree of nonmaleficence as when taking a formally produced drug, present- ing significant risks. On a small scale, those who syn- thesize and take biohacked insulin aim to benefit themselves, disqualifying these actions from serving as activism. However, the DIY synthesis of insulin, au- tomated insulin delivery (AID) devices, and the spread of the movement using social media allow bi- ohacking to serve as a form of activism and as a tool to promote change in diabetes treatment. There is a distinction between type 1 and type 2 diabetes. Type 2 diabetes often develops due to lifestyle factors, whereas type 1 diabetes is mainly caused by genetics and typically affects people throughout their lives, starting from an early age. These conditions force type 1 diabetics to continu- ously rely on the healthcare system and create a vul- nerability that allows pharmaceutical companies to capitalize on patients with no control over their life- long disease. Frustration in the healthcare system and the status of diabetes treatment has led to the #WEARENOTWAITING movement, which consists pri- marily of type 1 diabetic individuals who advocate for increased access to insulin delivery technology through making their own AID devices. One advo- cate, Timothy Omer, has had type 1 diabetes for more than 22 years and currently works to develop a novel Artificial Pancreas System. He describes the re- ality of being a type 1 diabetic: The most modern accessible technology for type 1 diabetes management is an insulin pump, which provides a constant supply of insulin, as well as a self-funded continuous glucose monitor, which provides real-time feedback of the patient’s blood sugar levels. These devices provide many functions and high volumes of data, all of which are very welcome and useful, but such systems always fail with regards to patient expectations to understand and process all of this infor- mation. As a result, patients become overwhelmed by a feel- ing of judgement by healthcare professionals, the vast amounts of ensuing information, and alert and alarm “shouts” from their devices when they have failed at being a “good diabetic”, as well as with their own disappointment of their body letting them down.[9] Omer demonstrates that he and others are tired of waiting for a change in how type 1 diabetes treat- ment is approached. This frustration has pushed them to engage in biohacking in order to regain agency over their health condition. The physical act of making the AID device empowers patients to feel as though they are regaining power after years of feeling controlled by the healthcare system, and the low prices of this equipment make it increasingly fi- nancially accessible and allow it to act as a catalyst for the spread of the movement. One prime exam- ple is one mother’s model of a DIY artificial pancreas for her daughter: “Sydney, now 15, is still using an updated version of that DIY system, which, because a fellow DIYer donated the pump, cost only $250 to make…Apple Inc. and Eli Lilly & Co. have hired DIYers, and Medtronic’s latest FDA-approved prod- uct can now do most of the things the Farnsworths’ system can—for $7,000, before insurance…”[6] Not only is the act of making one’s device (previously re- served for healthcare professionals) shocking, but the significantly lower prices allow the #WEARENOTWAITING movement to draw media atten- tion and gain support. Although only a tiny portion of the population lives with type 1 diabetes, almost ARESTY RUTGERS UNDERGRADUATE RESEARCH JOURNAL, VOLUME I, ISSUE III everyone can relate to feeling frustrated or upset at high medical costs. Also, regardless of social class and safety factors, people would favor lower healthcare costs, making it easy for the #WEARENOTWAITING movement to draw support. Pre- viously, pharmaceutical companies held power to impose high prices, knowing that patients would likely try to obtain these devices or medications at all costs. However, if biohacking continues to grow, it could provide an alternative way for people to ob- tain medicines, threatening the long-held domina- tion of the healthcare system. This change would represent a revolution in the way people view healthcare, allowing biohacking insulin on a large scale to serve as activism. Further, biohacking not only democratizes medicine by making it increas- ingly financially accessible but also simplifies science so that people without advanced degrees can intel- lectually comprehend the processes, fulfilling Beau- champ and Childress’ principle of distributive jus- tice. They indicate: “distribution of all rights and re- sponsibilities in society, including, for example, civil and political rights.”[1] Perhaps it is time to provide patients who suffer from these lifelong conditions, rather than the monopolistic healthcare system, a greater say in their treatment; biohacking offers them the opportunity to do so. 3 DIY EPIPEN Although biohacking insulin and EpiPens are similar in that they are critical to the lives of those with diabetes and life-threatening allergies, EpiPens differ from insulin regarding cost, safety, and the main ethical principles that pertain to situations in which one requires these medications. Biohacking insulin requires the actual medicine to be synthe- sized while biohacking EpiPens does not. In contrast, only the injector is made for EpiPens. This cost differ- ence would lead to varying levels of accessibility. For instance, synthesizing insulin requires not only chemicals that could prove unattainable for many but it also requires the intellectual and scientific knowledge and ability to synthesize this medication. This process can be contrasted with that of the DIY EpiPen, which can be made using “off-the-shelf” parts for as low as $30, making the process intellec- tually more accessible to those without a scientific background.[4] One prominent distinction between DIY insulin and EpiPen is that the epinephrine in a DIY EpiPen can still come from a formal supplier, re- sulting in differences regarding safety. While DIY in- sulin contains a risk of poisoning oneself, the use of formally produced epinephrine in DIY EpiPens re- duces the risk of physical harm to individuals in com- parison. Although diabetes and allergies are both chronic conditions, there is the distinction of EpiPens as necessary upon exposure to an allergen to pre- vent immediate death. Beauchamp and Childress highlight this concept in their principle of benefi- cence, which includes “Rescue persons in danger.”[1] People with diabetes need insulin over time to pro- long their lives, but the immediate necessity of an EpiPen upon exposure to an allergen makes the danger of being without the life-saving device more imminent. The low costs, intellectual accessibility, and relative safety of these DIY EpiPens combined with the inherent, natural compulsion for humans to help other humans in cases of immediate need pro- mote the DIY EpiPen movement as a form of activ- ism. In 2016, the price increase in the Mylan Ep- iPen received media attention and backlash from consumers. The increasing prices had been an issue, increasing from “…$103.50 for a set. By July 2013, the price was up to $264.50, and it rose 75 percent to $461 by last May. This May the price spiked again to $608.61…”[11] As a response to these prices, Four Thieves Vinegar, a biohacking group founded in 2015, posted a YouTube video demonstrating how to inject oneself with a homemade epinephrine auto-injector and published a list of materials on how to do so. Donovan states that “shortly after the re- lease of the video, other biohacker groups and DIYers began offering epinephrine auto-injector al- ternatives online. ProgressTH (an international de- sign lab) released a statement announcing the de- velopment of a 3D concept for an at-home alterna- tive auto-injector, which would be printed for as little as $3 in materials.”[2] Although these biohackers pri- marily publicize their methods to help those with life- threatening allergies stay safe, they expose the healthcare industry’s issues and demonstrate the ARESTY RUTGERS UNDERGRADUATE RESEARCH JOURNAL, VOLUME I, ISSUE III dire need for change, qualifying them as accidental activists. The cost of biohacked EpiPens is meager compared to traditional EpiPen costs, ranging from $600 to $700; even those without financial strain would likely consider it an option to save money. However, these videos demonstrate how cheap the materials in the EpiPen are. Suppose an average per- son were to figure out a way to produce the injector as cheaply as $3. In that case, corporations almost certainly have ways to make them even cheaper, ex- posing the inflated prices. Companies that manufac- ture these devices could charge less and still make a profit, but they choose not to as a way to capitalize on people’s vulnerability. Instead, this selfishness forces people to risk harming themselves using a bi- ohacked injector to save their lives. The shocking idea of producing one’s own EpiPen resulted in the idea’s spread through the media, which would only result in positive reinforcement for the movement’s growth. Increasing numbers of posts and videos on the media pertaining to DIY EpiPens normalizes the concept and reduces its stigma. As a result, more people are likely to try to make their own EpiPens, further propagating the movement. For the rest of society, this movement’s media attention raises the question of what other medications corporations are overcharging for, sparking frustration against the healthcare industry, and fueling a more significant activist movement. In financial terms, saving money through producing one’s EpiPens would prevent a person from potentially overspending beyond his or her re- sources, fitting under the bioethical principle of be- neficence. Beauchamp and Childress also empha- size the physical aspects of beneficence: …a person X has a determinate obligation of beneficence towards person Y if and only if each of the following condi- tions is satisfied (assuming X is aware of the relevant facts): 1. Y is at risk of significant loss of or damage to life or health or some other major interest. 2. X’s action is needed (singly or in concert with others) to prevent this loss or damage. 3. X’s action (singly or in concert with others) has a high probability of preventing it. 4. X’s action would not present significant risks, costs, or burdens to X. 5. The benefit that Y can be expected to gain outweighs any harms, costs, or burdens that X is likely to incur.[1] In biohacking, however, X and Y would usu- ally be the same person, and in certain instances, a parent and child (a concept that I will later explore). Number 1 is satisfied by a person being in anaphy- lactic shock, and number 2 represents an EpiPen’s nature. Yet, the other points must be examined. Re- garding numbers 3 and 5, one could argue that DIY epinephrine injectors have high risks compared to those formally produced. For instance, Willingham states, “A syringe doesn’t offer the benefit and safety advantage of a well-calibrated dose, and it carries the risk of injection into a vein, instead of muscle, which can be fatal.” With an untrained individual ad- ministering a medical technique that he or she does not have formal training in, there are risks. Yet, the necessary medication must be administered to pa- tients with diabetes or allergies in the case of immi- nent death. Strikingly, the fourth idea is one of the main benefits of biohacking. For one person, the cost of EpiPens for her son was “more than her mort- gage payment,” and “her older son…just carries around expired EpiPens.”[13] Parents are forced to make the difficult decision of risking their child’s life or overstretching their financial needs, and biohack- ing allows them to prevent both. The high and unat- tainable costs of insulin and EpiPens create desper- ation in patients, resulting in the sense of hopeless- ness that prices will become unattainable and ulti- mately an overwhelming fear of death without the medication. Desperation often pushes people to do things they would not otherwise consider, such as synthesizing their own medicines. Biohacking serves as a form of activism: while trying to save their own lives, biohackers also promote change in the way people view the severity of high healthcare costs. Bi- ohacking’s attention, especially when spread using social media, allows others to support the move- ment and promote social and economic change, qualifying biohackers as activists. In the hands of the healthcare system, people often have no choice but to follow the rules and policies put in place. How- ever, biohacking allows these individuals to act and change the status quo. Therefore, biohacking serves as a physical representation of the changes people have wanted to make in the healthcare system. Alt- hough the act of biohacking does not directly result ARESTY RUTGERS UNDERGRADUATE RESEARCH JOURNAL, VOLUME I, ISSUE III in fair healthcare practices and prices, perhaps its shocking nature is enough to generate attention and support to move towards change. 4 AUTONOMY: TWO DIFFERENT TYPES? Autonomy, among Beauchamp and Chil- dress’ four principles of biomedical ethics, requires more examination due to the distinction between the traditional definition of autonomy and medical autonomy. Biohackers’ ability to synthesize their in- sulin and EpiPens grants them a powerful sense of independence that they did not previously have; they are autonomous in its traditional sense, mean- ing independent. However, Beauchamp and Chil- dress identify medical autonomy: “…in terms of nor- mal choosers who act (1) intentionally, (2) with un- derstanding, and (3) without controlling influences that determine their action…a broad continuum ex- ists on which autonomy goes from being fully pre- sent to being wholly absent.”[1] In medicine, auton- omy must involve the patient demonstrating under- standing of a treatment or procedure, and medical professionals must adequately inform their patients. However, when people become biohackers due to desperation, they face no obligation to understand the risks of their actions thoroughly. Without being medically autonomous, biohackers are inhibited from acting ethically when examined with Beau- champ and Childress’ model. The nature of biohack- ing facilitates impulsivity: “The ways in which DIY bi- ology is ‘governed’ or ‘regulated’ takes a distinctive form: rather than being top-down it is bottom-up; ra- ther than being defined by institutions or policymak- ers, it is collectively and openly negotiated by a large group of people…”[7] Because biohacking relies on the public to regulate themselves rather than formal rules, it can be easily misused, proving extremely dangerous. On the other hand, though, many ad- vancements in science have begun with experimen- tation, leading to ideas that may take many years for the public to accept. Perhaps biohacking is just one of these ideas that currently seems outlandish. As the concept continues to gain momentum and more safety measures are enacted, biohacking can be the next stage of scientific development. 5 APPLICATIONS OF AUTONOMY The high costs of necessary technology combined with the monopolistic nature of diabetic health care can cause people to feel powerless at the hands of the healthcare system. As a result, making their own technology grants them a feeling of finan- cial and personal autonomy. Currently, there is little to no formal regulation preventing this self-experi- mentation. Although there are no proper laws against biohacking insulin devices in the United States, the German model serves as an example of the current regulations: “Healthcare professionals must point out the dangers that may arise when us- ing a DIY AID system and should clearly distance themselves from the use of an open system and not encourage patients to use the system.”[8] Of course, healthcare professionals are worried about their pa- tients, but they also benefit from higher medications and treatment costs. Healthcare professionals fail to advocate for cheaper alternatives, leaving patients with no one to fight for them. Patients must engage in activism to promote the change they want, and bi- ohacking is one way for them to do so. The lack of limitation from governments, healthcare profession- als, and finances grants patients autonomy from a bi- omedical ethics perspective. Many patients who feel “overwhelmed” by the health care system are now free from this feeling. Beauchamp and Childress state: “We encounter many problems of autonomy in medical contexts because of the patient’s de- pendent condition and the medical professional’s authoritative position… In these instances, the pa- tient’s autonomy may be compromised because the physician has assumed an unwarranted degree of authority over his or her patient.”[1] Not only do health care professionals hold authority over pa- tients under the traditional health care system, but the healthcare industry controls the price and distri- bution of insulin and devices. However, health care professionals lack the right to prevent patients from making and using DIY AID systems. Therefore, when juxtaposed with the legal inability of healthcare pro- fessionals to prevent patients from using DIY biology to create their AID systems, patients are now free from what they feel is domination by the health care system. ARESTY RUTGERS UNDERGRADUATE RESEARCH JOURNAL, VOLUME I, ISSUE III 6 AUTONOMY OF PARENTS & CHILDREN The issue of people using biohacking on themselves is less controversial than people per- forming biohacking on others. Specifically, the case of parents using biohacked medicine and devices on their children sparks controversy. Because the children are dependent, they do not have the au- thority to refuse their parents nor the resources to obtain the medication for themselves through for- mal means. The extent to which parents must follow the principles of biomedical ethics must be exam- ined. For instance, Beauchamp and Childress iden- tify negligence as a subcategory of nonmaleficence: “Negligence is the absence of due care. In the pro- fessions, it involves a departure from the profes- sional standards that determine due care in a given set of circumstances. The term negligence covers two types of situations: (1) intentionally imposing risks of harm that are unreasonable (advertent negli- gence or recklessness) and (2) unintentionally, but carelessly, imposing risks of harm (inadvertent negli- gence).”[1] If parents do not attempt to obtain the in- sulin or EpiPen their child needs through formal means or biohacking, this could be regarded as neg- ligent. Just as medical professionals are required to follow the widely agreed-upon rules and procedures to ensure the safety of their patients, a parallel can be drawn to the parents, in which they are expected to provide their children with the safest medications possible—those produced by formal institutions. Therefore, parents synthesizing pharmaceuticals us- ing biohacking could also be considered negligent, where “due care” includes obtaining official medi- cine. The barriers to this situation should not be dis- regarded. Perhaps it is the pharmaceutical or insur- ance companies that are fostering this negligence, and they should therefore bear more responsibility. Biohacking also introduces an additional risk of harm for the children. For instance, the German laws for DIY AID systems indicate that “People who build DIY AID systems and transfer them to other patients are liable to prosecution under the Medical Devices Act in Germany. The placing on the market and commis- sioning of such a system are prohibited. The person who builds and transfers the system is responsible under the Product Liability Act.”[8] When biohacking for their children, parents take on additional ethical responsibility that, not being healthcare profession- als, they may not be able to uphold. These parents likely never wanted this responsibility, but healthcare conditions forced them to act. These drastic measures show the public how dire the situation is and characterize these parents as activists. 7 CONCLUSION The spread of biohacking techniques through social media and the internet can alter sci- ence and medicine, resulting in biohacking serving as a form of activism. One primary example of change brought about after the increase in biohack- ing is the reduced costs of the EpiPen, including the “release of a generic version of its device at about half the cost (about $340) of the brand name Ep- iPen…CVS also announced that the manufacturer would provide a $100 coupon for much of its finan- cially insecure population to reduce the out-of- pocket cost to about $10 per prescription.”[2] It is possible that the media attention received by bio- hackers threatened pharmaceutical companies, as these companies feared losing profit as more peo- ple attempted to biohack. Nevertheless, the bio- hackers who spearheaded the DIY EpiPen move- ment achieved social and economic change, alt- hough they risked their lives in the process, repre- senting activism. Perhaps these corporations will, in the future, be wary before imposing high and unat- tainable prices on consumers for fear of driving more people to biohack. If increasingly accepted by RESULTS INDICATE THAT MOST STATE- FUNDED PRE- SCHOOL PRO- GRAMS HAVE A LONG WAY TO GO IF INCREASINGLY ACCEPTED BY THE PUBLIC, BIOHACKING CAN DRASTICALLY CHANGE THE WAY PEOPLE VIEW THE RELATIONSHIP BETWEEN PATIENTS AND THE HEALTHCARE SYSTEM. ARESTY RUTGERS UNDERGRADUATE RESEARCH JOURNAL, VOLUME I, ISSUE III the public, biohacking can drastically change the way people view the relationship between patients and the healthcare system. Dyson proposes the fu- ture of biohacking: There will be do-it-yourself kits for gardeners who will use genetic engineering to breed new varieties of roses and or- chids. Also kits for lovers of pigeons and parrots and lizards and snakes to breed new varieties of pets. Breeders of dogs and cats will have their kits too…Few of the new creations will be masterpieces, but a great many will bring joy to their cre- ators and variety to our fauna and flora. The final step in the domestication of biotechnology will be biotech games, de- signed like computer games for children down to kindergar- ten age but played with real eggs and seeds rather than with images on a screen. Playing such games, kids will acquire an intimate feeling for the organisms that they are growing. The winner could be the kid whose seed grows the prickliest cac- tus, or the kid whose egg hatches the cutest dinosaur.[3] Dyson emphasizes the idea that biohacking will “bring joy” and that eventually, people will per- form biohacking for pleasure, in contrast to some- thing that is currently performed out of desperation. Although biohacking is still a new topic, the media attention it receives (coupled with its low costs) can lead to the democratization of healthcare and science. In its current state, biohacking presents a tempting option for those who seek to avoid the high costs of the traditional healthcare system. Yet, the risks of this unregulated experimentation deter many rationally thinking people. However, in the fu- ture, if ethical and safety regulations are put in place, people begin devising new ways to use biohacking and posting these ideas on the media; biohacking can break financial and intellectual bounds. Alt- hough the first amendment protects free speech, sites can employ community rules or rules of con- duct to promote the safety of biohacking. No longer would people feel helpless under a system that con- trols their health. If perfected and made applicable to more situations, biohacking could challenge the long-standing dominance of formal institutions and grant more power to the average person. In activism, people often seek the traditional definition of justice, which typically means fairness. Biohackers fall under this category and aim to achieve fair prices and ac- cess to medications. However, just as there are mul- tiple definitions of autonomy, there are also different forms of justice; Beauchamp and Childress define the concept of justice in a biomedical ethics context slightly differently. They describe their idea of mate- rial justice: “…primarily our obligations are limited to fundamental needs. To say that someone has a fun- damental need is to say that the person will be harmed or detrimentally affected in a fundamental way if that need is not fulfilled.”[1] Biohacking finally allows ordinary people to bring attention to the mes- sage that their needs are not met. Although this pur- pose was likely not intentional, by democratically synthesizing one’s medication, biohackers also fulfill the idea of justice from a biomedical ethics perspec- tive, aside from simply seeking justice in its tradi- tional sense. The idea of biohacking, or performing ex- periments once only reserved to formal institutions, can be shocking and disturbing to many. Biohacking has the potential to go wrong and harm people. Yet, in the case of chronic medical conditions such as di- abetes and allergies, biohacking offers a sense of control and a glimmer of hope for those put in a chal- lenging financial and medical situation. When exam- ining types of activism from rallies to boycotts to hun- ger strikes, all of these examples share one common feature with biohacking: they are striking to the pub- lic. Real, lasting change rarely comes from mundane activities, so perhaps the dangerous nature of bio- hacking is critical to it serving as activism. Also, low costs and media attention aid in biohacking spread- ing. When examining these applications of biomed- ical ethics using Beauchamp and Childress’ model, many nuances prevent biohacking from serving as a straightforward solution to high healthcare costs. However, because their principles apply to tradi- tional medicine rather than biohacked treatments, these principles should be updated to reflect the ethical concerns over the increasing popularity of bi- ohacking. Without an exact code of instructions, bi- ohackers are left to their own devices. Although bio- hackers have developed their code of ethics consist- ing of broad principles such as responsibility and transparency, this unofficial code resembles more of a list than rules for biohackers to follow. When juxta- posed with Beauchamp and Childress’ model, the biohacker code of ethics is concise and nonspecific. ARESTY RUTGERS UNDERGRADUATE RESEARCH JOURNAL, VOLUME I, ISSUE III Therefore, perhaps it is time to develop a model of ethics for biohackers. Out of the four principles, be- neficence, nonmaleficence, and justice can remain largely the same. However, due to the freedom granted by individuals performing biohacking on themselves, the principle of autonomy should be al- tered to emphasize the importance of a complete understanding of risks and rewards before one per- forms biohacking to ensure its ethical soundness as increasing numbers of people engage in biohacking in hopes of saving lives and promoting change∎ 8 REFERENCES [1] Beauchamp, Tom L., and Childress, James L. Principles of Bi- omedical Ethics. 8th ed. Oxford University Press, 2019. [2] Donovan, Matthew C. J. Pop-up Maktivism: A Case Study of Organizational, Pharmaceutical, and Biohacker Narratives. 2019. Arizona State University. PhD dissertation. [3] Dyson, Freeman. “Our Biotech Future.” New York Review of Books, vol. 54, no, 12, 2007. [4] Four Thieves Vinegar, accessed: 6 Dec. 2020, HTTPS://WWW.FOURTHIEVESVINEGAR.ORG [5] Gallegos, Jenna E., et al. "The Open Insulin Project: A Case Study for 'Biohacked' Medicines." Trends in Biotechnology, vol. 36, no. 12, 2018, pp. 1211-1218. [6] Kresge, Naomi and Cortez, Michelle. “The $250 Biohack That’s Revolutionizing Life With Diabetes.” Bloomberg, 2018. [7] Landrain, Thomas et al. "Do-it-yourself biology: challenges and promises for an open science and technology move- ment." Systems of Synthetic Biology, vol. 7, no. 3, 2013, pp. 115-126. [8] Oliver, Nick et al. “Open source automated insulin delivery: addressing the challenge.” Digital Medicine, no. 124, 2019. [9] Omer, Timothy. “Empowered Citizen ‘Health Hackers’ Who are Not Waiting.” BMC Medicine, vol. 14, no. 118, 2016. [10] Osterath, Brigitte. “Do-It-Yourself Insulin: Biohackers Aim to Counteract Skyrocketing Prices.” DW, 2019, WWW.DW.COM/EN/DO-IT-YOURSELF-INSULIN-BIOHACKERS-AIM-TO- COUNTERACT-SKYROCKETING-PRICES/A-48861257. [11] Parker-Pope, Tara and Peachman, Rachel Rabkin. “EpiPen Price Rise Sparks Concern for Allergy Sufferers.” The New York Times, 2016. HTTPS://WELL.BLOGS.NYTIMES.COM/2016/08/22/EPIPEN-PRICE-RISE-SPARKS- CONCERN-FOR-ALLERGY-SUFFERERS [12] Rajkumar, S. Vincent. “The High Cost of Insulin in the United States: An Urgent Call to Action.” Mayo Clinic Proceedings, vol. 95, no. 1, 2020. [13] Willingham, Emily. “Why Did Mylan Hike EpiPen Prices 400? Because They Could.” Forbes, 2016. HTTPS://WWW.FORBES.COM/SITES/EMILYWILLINGHAM/2016/08/21/WHY- DID-MYLAN-HIKE-EPIPEN-PRICES-400-BECAUSE-THEY-COULD/ Julia Zheng is a junior at Rutgers University-New Brunswick pursuing a Bachelor of Science in Cell Biology and Neuroscience in the School of Arts and Sciences Honors Program with a minor in Psy- chology. She conducted research for this paper in her Research in the Disciplines: Science, Medi- cine, and Society course in Fall 2020. Julia is interested in science and medicine and has the goal of pursuing a career in the medical field as a physician. At Rutgers, Julia is President of the Bioethics Society, conducts research in Dr. Alexander Kusnecov's lab, and works as a part-time lecturer for the Physics Department. Outside of school, she works as a medical assistant and receptionist at a pediatrician's office and enjoys volunteering in her community. https://www.fourthievesvinegar.org/ http://www.dw.com/en/do-it-yourself-insulin-biohackers-aim-to-counteract-skyrocketing-prices/a-48861257 http://www.dw.com/en/do-it-yourself-insulin-biohackers-aim-to-counteract-skyrocketing-prices/a-48861257 https://well.blogs.nytimes.com/2016/08/22/epipen-price-rise-sparks-concern-for-allergy-sufferers https://well.blogs.nytimes.com/2016/08/22/epipen-price-rise-sparks-concern-for-allergy-sufferers https://www.forbes.com/sites/emilywillingham/2016/08/21/why-did-mylan-hike-epipen-prices-400-because-they-could/ https://www.forbes.com/sites/emilywillingham/2016/08/21/why-did-mylan-hike-epipen-prices-400-because-they-could/