The Rutgers Journal of Bioethics is an undergraduate journal exploring the intersection of ethics, biology, society, public health, and public policy. Published each year since 2009, the Journal is staffed by undergraduate students at Rutgers, the State University of New Jersey in New Brunswick and is funded through generous contributions from the Rutgers University Student Assembly Allocations Board.
The student staff publishes the Journal annually during the spring semester and welcomes a wide array of works that fall under the vast umbrella of bioethics—original essays, editorials, book reviews, and art. All persons wishing to participate in this open discussion are encouraged to submit their work, including undergraduate students, graduate students, and professors from Rutgers as well as other institutions. For written works, please share your article as a Google Document (.doc/.docx) in double-spaced, Times New Roman, 12-pt. font, and format citations using the stylistic guidelines published by the American Psychological Association (APA format). Please include the article title, institutional affiliation, abstract, email, and phone number with your submission. To be considered for inclusion in the Journal, please share your writing or high-resolution image of your work of art via email (firstname.lastname@example.org).
The submission deadline for inclusion in the 13th edition of the Journal is October 16, 2021.
Editor-in-Chief: Cindy Song. Editors: Lily Chang, Nicole Au, Alexandra Deutsch, Hamail Iqbal, Khushi Patel, Sanjana Pendharkar, Prianka Kunadia, Siddhant Kumarapuram Ganapath, Sam Lo Weinglass.
The 12th volume of The Rutgers Journal of Bioethics deal with the human consequences of incorporating technological advancements into society. Alexandra Deutsch, an associate editor of the Journal, opens this volume with a critical examination of a past experiment in inoculating the global population against smallpox. Next, an editorial by Daniel Peltyszyn, our former managing design editor, presents a case for mandatory vaccination. Christina Ren discusses how individuals interpret, grapple with, and construct meaning from genetic disease risk scores. Dr. Allie Dayno argues for newborn screening reform to better serve disadvantaged families. Drs. Janet Dolgin and Renee McLeod-Sordjan analyze the moral and legal liminal space occupied by cryopreserved embryos. The genetic testing and assisted reproductive technologies examined in these articles do not exist in a vacuum but instead interface daily with healthcare professionals and patients, whose lives are personally impacted.
Questioning the Motives and Methods of Imperialistic Vaccination Programs
By Alexandra Deutsch.
Compulsory Vaccinations Can Be Ethically Justifiable
By Daniel Peltyszyn.
Psychosocial Impacts and Behavioral Outcomes Associated With Receiving Polygenic Risk Scores
By Christina Ren.
To date, clinical genetics is primarily focused on identifying rare genetic variants that confer a large effect on disease risk. However, the genetic basis of common complex diseases is largely determined by the cumulative effect of many common variants across the entire genome. While individually each of these associated single nucleotide polymorphisms (SNPs) has a small impact on disease risk, their combined effect, calculated as a polygenic risk score (PRS), is large. The generation of PRS data and their predictive ability for disease risk is rapidly evolving and improving. As polygenic testing is implemented more broadly, there is a critical need to assess how this new type of genetic information is being communicated to people and how individuals respond to the knowledge of their probabilistic susceptibility to disease. With the availability of polygenic testing pushed to the forefront of genomic interpretation for complex conditions, genetic counselors need to consider how to apply and manage this information in various settings.
Unwinding the Ethical Concerns of Newborn Screening in the Age of Genomic Medicine
By Allie Dayno.
The bioethical analysis of newborn screening (NBS) in the United States is not a new topic. Nevertheless, as newborn screening dives into the age of genomic medicine with pilot studies to assess whole exome sequencing at birth and support for expansion of the federal government’s Recommended Uniform Screening Panel (RUSP), it is imperative to examine the principles of beneficence and equity in relation to NBS. Every newborn undergoes NBS; however, those children in marginalized and disadvantaged communities may face barriers that prevent them from gaining the benefits of early screening and diagnosis. The focus must be on awareness and education surrounding an equitable NBS process and on using evidence-based protocols for adding new conditions to the panel.
The Determination of Embryonic Status: Merging Context and Whim
By Janet Dolgin and Renee McLeod-Sordjan.
The collapse of moral arbiters in American society has led to the theoretical and practical resolution of familial matters in courts of law. In recent years, assisted reproductive technology has aided many individuals in delaying and achieving parenthood through cryopreservation of embryos. A conservative estimate suggests that there are presently well over hundreds of thousands— probably over one million—cryopreserved embryos in the United States. While embryos are generally not accorded an ontological status of personhood, the abortion debate has implicitly shaped legal discourse. Cryopreserved embryos are genetic extensions of procreating persons who desire parenthood at some point in time. The complexity of societal and cultural norms of parenthood
creates complex indecisions regarding the use, donation, and/or disposal of cryopreserved embryos. Legal decisions, occasioned by disputes about the disposition of cryopreserved embryos, illustrate the apparent need to determine embryonic status. This article focuses on legal cases that have entertained the uncertainty of embryonic status in society and highlights the protections afforded to individuals in their pursuit of life, liberty and parenthood.
Editor-in-chief: Namrata Pandya. Editors: Nandini Mishra, Cindy Song, Devika Paul, Alona Zunger, Lily Chang, Nicole Au, Khushi Patel, and Prianka Kunadia. The 11th volume of The Rutgers Journal of Bioethics specifically discusses questions surrounding control of biotechnological developments by regulatory bodies. The Journal exposes the line these applications draw between the vulnerability and empowerment of both the individual and the population and reflects upon on how this line should be treaded — specifically how it should impact policy at the institutional level. By understanding our biological realities as well as the politics and laws surrounding them, we are well-equipped to advocate for ourselves and enact change, be it by picketing, voting, or becoming the policymakers. I sincerely hope readers find these works enriching, thought-provoking, and inspiring.
A Right to Die?
By Alona Zunger.
The United States is in a liminal space regarding legislation on physician assisted suicide (PAS). The practice is currently legal in a few states and is intended for people with less than six months to live. On one side of the judicial scale lies the sanctity of life argument, that life is precious and should be preserved at all costs. This teeters in competition with the argument that in order to have individual autonomy, a person’s right to die on his or her own terms is necessary. Autonomy is a concept dear to the average American, central to the founding and maintenance of the country, and should be prioritized with respect to PAS legislation. The enumeration of a right to die for the terminally ill can occur through the usage of the substantive due process clause; however, this is unnecessarily prevented due to the largely unfounded fear that a legal and social progression will occur.
Agency and Accountability: Ethical Considerations for Brain-Computer Interfaces.
By Erika J. Davidoff.
Brain-computer interfaces (BCIs) are systems in which a user’s real-time brain activity is used to control an external device, such as a prosthetic limb. BCIs have great potential for restoring lost motor functions in a wide range of patients. However, this futuristic technology raises several ethical questions, especially concerning the degree of agency a BCI affords its user and the extent to which a BCI user ought to be accountable for actions undertaken via the device. This paper examines issues of limited agency, consent, and malfeasance that are found at each of the three major parts of the BCI system: the sensor that records neural activity, the decoder that converts raw data into usable signals, and the translator that uses these signals to control the movement of an external device. Due to these concerns, BCIs are not currently ethically viable for widespread use; however, by focusing on improving biocompatibility, increasing recording sensitivity, and developing more transparent algorithms, BCIs could become practical, ethical, and life-changing therapeutic options.
The Fertility Industry: A Dangerously Untouched Market in Health Care.
By Caleigh Propes.
The fertility industry is experiencing an unprecedented boom in growth in recent years, with an especially pronounced increase in in vitro fertilization procedures and other assisted reproductive techniques. While these fertility services provide patients with highly meaningful additional means to procreate, the scant regulation of the market poses safety and accessibility threats to consumers. Moving forward, increased oversight by entities like the American Society for Reproductive Medicine and Society for Assisted Reproductive Technology, along with robust state legislation governing clinical standards, will act to increase the safety of these procedures. Other legislative reforms could also increase access to fertility services, lowering the barrier to entry for patients wishing to conceive.
Overdiagnosis in Breast Cancer Screening: How a Population Level Bioethics Perspective Can Improve Public Health.
By Sofia Barnes-Horowitz.
Excessive screening for breast cancer is a common practice in the United States and often leads to the overdiagnosis of many minimal, non-lethal tumors which cause a multitude of potential harms for patients without reducing breast cancer mortality rates. The issue is increasingly complicated given the current health policy climate: patients are frequently deferred to by their physicians for complicated healthcare decision making, there is a negative public perception of “rationing” care, and unbiased comparative effectiveness research is not widely disseminated. With these factors and more interacting, the conversation surrounding breast cancer screening can be reframed to focus on a public health perspective instead of an individual one. This would make it easier to see how the system is harming instead of helping and ultimately better protect the health of American women.
“Technologies of the Self ” and the Politics of Empowered Biocitizenship.
By Katie Gu.
Biotechnological innovation is demonstrating, with accelerating momentum, our abilities to hold power and control over life. Recent innovation has conferred a higher degree of biological agency to the individual citizen, rather than solely relegating control to centralized scientific or governing bodies. The present paper analyzes new processes of empowered biocitizenship that are reshaping biological knowledge to be more distributable, actionable, and centered around the individual self. I conclude with a discussion on responsibility thus necessitated by twenty-first century movements towards democratic and empowered models of biocitizenship.
Editor-in-chief: Meredith Giovanelli. Editors: Daniel Peltyszyn, Namrata Pandya, Devika Paul, Alona Zunger, Nandini Mishra, Cindy Song, and Sabeen Rokerya. The 10th volume of our Journal presents a number of issues ranging from policy analysis to case studies. Together we will explore financial incentives involved in kidney donation, concierge medicine, and cancer care in the United States. Furthermore, we will take a step back and explore global issues with an article on cross-cultural bioethics and an analysis of the medical student’s role in international health. It is my hope that this body of work sheds light on topics previously kept in the shadows. Literacy in science is exceedingly important in a world where reliable sources are difficult to come by and where social media often muddles the facts.
Addressing the Ethics of Removing the Financial Disincentive of Living
By Emily Slome. Some bioethicists have recently argued that the current legislation in the United States surrounding living kidney donation should be amended in order to remove the financial disincentive of donation. While the law allows for certain kinds of reimbursement, it makes it extremely difficult for living kidney donors to be completely reimbursed for their donation-related expenses. This lack of complete reimbursement can be a deterrent for those who wish to donate. In this paper, I argue that there is an ethical obligation to allow donors to be more fully reimbursed. In order to do so, I address what I take to be the best arguments in favor of leaving the legislation as is and explain why those arguments fail.
Ethical Concerns of Concierge Medicine in America.
By Emily Sayegh. Concierge medicine has grown in practice, partly as a result of the increasing issues within the American healthcare system. This system allows physicians to limit the number of patients seen by charging an annual fee, which buys the patient unique and exclusive services from an “on-call” physician. However, this practice negates the ethical principles of healthcare as it discriminates against those unable to pay. In this paper, I argue that concierge medicine is not the solution to healthcare issues like “physician burnout” and overpacked clinics. Rather, concierge medicine is unethical, compromises the healthcare of poor communities, and disproportionately redistributes much needed medical expertise in favor of the elite.
Employing Embodiment Bioethics: A Cancer Care Case Study.
By Danielle C. Thor. Holistic bioethical inquiry requires the understanding and utilization of several analytical techniques to contextualize and ultimately alleviate a variety of presented conflicts. Of these techniques, embodied ethics, or ethical exploration based on the process in which a body comes to know itself within a social context, may serve greater purpose to the aspiring bioethicist than initially imagined. Through a clinical cancer research case study, the three dominant embodiment types—body as a specimen, patient, and spectacle—are examined for their utility. The study also suggests new avenues for exploration in extensions of embodied ethics.
Bioethical Implications of Medical Student Participation in Global Health Experiences.
By Travis Kling. Global Health Experiences are an increasingly popular activity for medical students, with thousands of students travelling internationally each year. Students stand to gain both personal and professional competencies from participation. However, their involvement raises a number of ethical considerations in regard to patient safety and health. Nonetheless, with adequate oversight and institutional interventions, medical student integration into international health can be realized both ethically and practically.
Which is Which and Why This: An Analysis of Ambiguous Genitalia and Cross-Cultural Bioethics.
By Esther Antwiwaa-Bonsu. In this paper, I blend narrative and bioethical principles about intersex disorders, first presented by Hugh Hampton Young, to examine a case study on the topic. I start by dissecting the difference between sex and gender in order to provide context for the principal case. By illustrating a clinic appointment, I begin to explain how intersex disorders oftentimes mix issues of gender identity, gender dysmorphia, and biology. I also discuss how the U.S. and the U.K. would approach a situation like this, while offering a recommendation to the patient in either of these countries.
Editor-in-chief: Meredith Giovanelli. Editors: Daniel Peltyszyn, Mahathi Pentavalli, Manya Goldstein, Tuhina Bhat, Devon Gillen, Ashley Kunnath, Nandini Mishra, Namrata Pandya, and Sabeen Rokerya. We encourage you to use this publication as a starting point to increase awareness and promote discussion of these exceedingly important bioethical topics. The issues addressed in the following pages demand action. After all, bioethics is an activity that encourages shared, reflective examination of ethical issues in healthcare, science, and related policy, the key word being “shared.” We do not live our lives in isolation; health is a collective effort. It requires us to challenge assumptions about the way we approach community, national, and global issues. And most essentially, it requires us to participate and engage.
The Ethical and Legal Implications of Human Germline Editing and Cytoplasmic Transfer as Assisted Reproductive Technologies.
By Divya Thonur. Germ-line editing is a type of genetic modification process, whereby the genomes of gametes (egg and sperm cells) or early embryos are selectively and intentionally modified for the removal of undesirable traits or the implementation of certain desirable features. With respect to human germline modification, it aims to repair or eliminate a threatening mutation that could cause devastating disease and has huge ethical and legal implications for society and for future generations on a global scale. Unlike cytoplasmic transfer, germline gene editing has far-reaching effects as it aims to modify the nuclear DNA in sex cells, not the mitochondrial DNA.
Ethically-mandated Responses to the High Prevalence of Mental Health Conditions in American Indian/Alaska Native Women.
By Sajya Singh. American Indian/Alaska Native (AI/AN) women access fewer mental healthcare resources than White women despite a higher prevalence of mental health conditions in this population. Factors in the psychosocial environment of AI/AN women may contribute to the elevated proportion of individuals in this group affected by higher levels of violence, poverty, and historical trauma. The most prominent mental health conditions for AI/AN women are post-traumatic stress disorder, alcohol abuse, and major depression. These findings mandate a response to alleviate the burden of mental health concerns in AI/AN women. In particular, greater persecution of perpetrators of sexual assault, an increase in research analyzing mental health and resource use in the AI/AN community, and retribution for historical trauma caused by the systematic oppression of AI/AN women are recommended. Each of these efforts should be done in a way that empowers AI/AN women to lead the proposed changes and that respects the cultural traditions of the AI/AN community.
Intent versus Impact: Ableist Assumptions are Dangerous to Disabled Patients.
By Hannah Kent. There is an undeniable culture of unequal treatment between patients with and without disabilities. This work will address the moral conflict between well-meaning healthcare workers, their duties to provide compassionate care, and the actual expression of these duties as experienced by patients with disabilities. I will introduce first-hand accounts of these experiences, outline the biases and assumptions that underlie the culture that allows them, and provide evidence that those assumptions are incorrect. I then identify that the ableist conflation is a significant factor in promoting ableist bias in health care, and that the surrogate decision making technique of the Best Interest Standard allow them to persist.
Teens and Children in Clinical Research: An Ethical Discussion.
By Anastasia Matano. Thousands of children and adolescents in the United States, from ages 0-18, are afflicted with diseases that have no known cure or treatment. While medical journals boast the discovery of new treatments spawned from innovative clinical trials, many fail to recognize that a majority of these clinical trials only focus on the adult demographic and fail to properly cater to adolescents who are afflicted with the same or a similar disorder. This major misconception in the medical community has prevailed for decades: that adolescents are “small adults.” This idea stems from the scientific hypothesis that adult dosages of clinically tested medications can simply be modified for children depending on factors like height, weight, age, etc. The unfortunate truth, however, is that children cannot rely on dosages established by adult clinical trials. There remains an urgent need to include adolescents from ages 0-18 in clinical trials that study deadly diseases and disorders, for if this does not occur, the field of medical research will have failed the adolescent population in its promise of fair participant selection.
Psychological Effects of Post-IVF Options.
By Caroline Kratka. The research discussed in this paper covers the psychological adjustment of patients following their decisions after an unsuccessful IVF treatment. The decisions investigated include: adoption, assisted reproductive treatments such as donor egg, donor sperm, or surrogacy, or forgoing all treatment and attempts to have a child. The psychological effects of these options will be considered in turn, with the information coming from a review of productive infertility studies. Overall, there was no option that appeared to be the “ultimate” choice in regards to long-term mental health. Rather, the majority of patients were able to find happiness in life regardless of the decision they made. The goal of this paper is to provide IVF patients with a basis for understanding the mental health effects associated with the options available to them, and in doing so help them to consider the optimal option for their family.
Why Medical Students, Doctors, and Other Healthcare Professionals Should Care About Mass Incarceration.
By Ikenna Achebe. Today, mass incarceration is an epidemic in the United States and demands the attention of medical students, doctors, and health professionals. With well over 2 million people in jails and prisons, there are more prisoners in the United States than any other country in the world, and it has been well documented that the United States has only 5 percent of the world’s population, but 25 percent of the world’s prisoners. The number of people incarcerated in this country has grown more than six-fold since the 1970s. The current rate of incarceration, 693 people confined per 100,000 residents, is 5 to 10 times larger than European countries with comparable crime rates and is higher than the incarceration rates of countries with much higher rates of violent crime. In fact, the United States houses more inmates than the top 35 European nations combined. The incarceration problem facing this country is a full-fledged epidemic. It calls for the attention of healthcare providers because it has deleterious effects on the health of those incarcerated, both before and after their release. It drives health inequities that destroys families and communities, and it costs the country billions of dollars annually that could otherwise provide healthcare coverage to those that cannot afford it.
Socio-Ethical Analysis: The Immortal Life of Henrietta Lacks.
By Eun Young (Isabel) Park. In this paper, I take a sociological perspective to analyze Rebecca Skloot’s bestselling The Immortal Life of Henrietta Lacks and highlight some of the ways in which it fails to adequately raise important aspects of the bioethical issues that are central to Henrietta Lacks’ story. By using empirical studies that examine the effects of Skloot’s book on bioethical debates as a starting point, I suggest that social factors — racial and class hierarchies, to be specific — which had inevitably crucial effects on the way Lacks’ life played out could have been better addressed in order to more raise a more fully aware and developed discussion of bioethics in practice.
Editor-in-chief: Vandana Apte. Editors: Rajvi Shah, Mahathi Pentavalli, Denzel Zhu, Ashley Kunnath, Daniel Peltyszyn, Sabeen Rokerya, Emily Mugno, Meredith Giovanelli, Tanushree Bansal, Matthew Lukowicz, Megan Coakley. Of particular concern in the year 2017 are minority rights and health, as these topics have continuously risen to the surface in light of recent political change. As such, we have selected articles that especially explore these themes—whether it be through the legal history of birth control court cases or through an analysis of the exploitation of the global South by the global North in conducting clinical trials. The Rutgers Journal of Bioethics realizes that it is more important than ever before to consider the intersectionality of human rights, health, and ethics.
Editors-in-chief: Vandana Apte, Nile Khan. Editors: Janna Aladdin, Megan Coakley, Rajvi Shah, Denzel Zhu. The year 2016 ushers in a host of unique ethical concerns relating to new medical procedures, legal breakthroughs, and cultural change. The seventh annual Rutgers Journal of Bioethics explores a handful of these concerns through a diverse set of analyses. This issue covers multiple perspectives on the multifaceted subjects of assisted suicide, right-to-try laws, end-of-life planning, new medical technologies, abortion, intersectionality in research, ADHD over-diagnosis, and sterilization practices.
Editors-in-chief: Sophia Tan, Nile Khan. Editors: Monika Masanam, Vandana Apte, Denzel Zhu, Rajvi Shah. Perhaps the most significant unit in life is the gene. No other biomolecule has the potential to regulate behavior, influence health, control all life processes, and permeate every aspect of our lives. The study of genetics is bidirectional: it holds the key to our individual identities, as well as our evolutionary histories. Not coincidentally, bioethics parallels this duality—the cases we study are morally ambiguous. Recent epidemics remind us that it is unclear whether certain measures intended to relieve one from harm may exacerbate it in others. Are we to administer placebos to Ebola victims when there is an experimental drug at hand, or ought we risk clinical trial results and further delay drug approval for treatment of a wider set of patients? If doctors do not accept pediatric patients who have not been vaccinated, are their efforts commendable for protecting against the measles outbreak, or are they violating their vow to treat all patients without bias?
The ambiguity of bioethical cases is what makes them worth discussing. In this issue of The Rutgers Journal of Bioethics, students representing different universities and fields address some of the most challenging questions faced by the medical community today. Our featured essays highlight the most debated topics in genetics and ethics: we present two papers supporting different views on in vitro fertilization, and an article arguing for the safety of genetically modified organisms.
Editor-in-chief: Cory Patrick. Editors: Sophia Tan, Lynn Ma, Boluwarin Adunbarin. In this edition, we establish that the diversity encompassed by the field of bioethics is not limited to geographical or academic diversity; bioethics is a field that extends its reach across time, into the past and as far into the future as we can imagine. It is a field both relevant to the proceedings of Congress and to the way we make day-to-day bureaucratic decisions. Bioethics permeates nearly every layer of our lives and of our institutions. It is nearly inescapable, surfacing every time we sort our recyclables, make the choice to go paperless, visit the doctor or wonder what’s going to happen to us when we get old. It returns at the start of every sci-fi film and with the last sip of every canned beverage. Every one of us is certain to confront a bioethical debate on a daily basis; the question is whether the average person would be able to recognize the encounter?
Editor-in-chief: Cory Patrick. Editors: Lynn Ma, Leena Shah, Chloe Schmidt. Our goal for the fourth publication of the Rutgers Bioethics Journal is to convince a few more people to regularly incorporate bioethical discussion into their lives. It’s these discussions that will shape the boundaries and capabilities of science and medicine for years to come.
Editor-in-chief: Maryann D. Murtagh. Editors: Rohini Holali, Ishani Sharma, Timur Suhail-Sindhu. Together we approach the crest of 2012: a year marked with urgency in debates between religion and science. Much like discussions oriented toward bioethics, academic disciplines are coming together to partake in scholarship concerned with how ethics and morality are involved in inciting natural phenomena of epic proportion. While some camps argue 2012 will mean a flip of magnetic fields or a shift in the axis of the Earth’s rotation, many cannot detach from Mayan astrology, Nostradamus-like prophecies, or apocalyptic convictions underlining their theories. It is not simply at this moment, however, that we approach medicine, technology, and the environment with a kind of theological reverence. The Rutgers Journal of Bioethics looks at many historical perspectives, reflecting how important it has been for scientific and humanistic pursuits to consort. With the publication of our third volume, we hope to highlight bioethics as an interdisciplinary space grappling with controversial, timely, and relevant topics by bringing questions of current practices to light through past praxes and beliefs.
Editor-in-chief: Maryann D. Murtagh. Editors: Ben Davis, Anna Latka, Gillean Cortes, Spruha Magodia. The thematic directives suggested by the traffic signs illustrate that everyday people are the engines driving these scholarly discussions fueled by the agency knowledge provides. With this, I echo a challenge to our audience from the first volume: to think critically about these issues and to use knowledge as a guide for future courses and roads traveled. I thank and congratulate our authors for their willingness to delve into bottomless pits of research and to bring ethical dilemmas into the spotlight. I, therefore, extend my perpetual gratitude and, without further discourse, introduce the Rutgers Journal of Bioethics.
Editors: Ami Amin, Nathaniel Jones, Sejal Shah. In these pages, you will find covered various topics, from Posthumous Sperm Procurement to the ethical issues involving the use of Dwarfs in the Entertainment Industry. Our goal was to include a wide breadth of topics in order to appeal to a large audience. We also thought it was important for the reader to understand the opinions of Rutgers students because it is that backdrop that frames our own perceptions of bioethical issues. As such, you will get a sample of how the Rutgers University undergraduate population feels about clinical trials of new drugs in underdeveloped countries and also unbalanced funding for medical programs (HIV vs. cancer funding). Bioethics is not confined to our university nor is it confined to our country. Although healthcare reform has only recently reached our attention, other parts of the world have been grappling with their own bioethical contentions. We urge our readers to stay tuned into global affairs. You will find a Bioethics without Borders section included in this journal to satisfy just that.