The Rutgers Journal of Bioethics - Volume XII, Spring 2021 - Sites@Rutgers
←
→
Page content transcription
If your browser does not render page correctly, please read the page content below
the Rutgers Journal of Bioethics Volume XII, Spring 2021
THE RUTGERS JOURNAL
OF BIOETHICS
VOLUME XII, SPRING 2021
JOURNAL STAFF
Cindy Song Editor-in-Chief & Managing Design Editor
Lily Chang Managing Editor
Nicole Au Senior Design Editor
Hamail Iqbal, Siddhant Design Editors
Kumarapuram Ganapath
Alexandra Deutsch, Siddhant Associate Editors
Kumarapuram Ganapath, Prianka
Kunadia, Khushi Patel, Sanjana
Pendharkar, Sam Lo Weinglass
SOCIETY STAFF
Rishabh Hirday, Rushabh Mehta Presidents
Siddhant Kumarapuram Ganapath, Programming Chairs
Maxim Yacun
Julia Zheng Treasurer
Mann Patel Events Chair
Sarah Salama Public Relations Chair
Dr. Mark Budolfson Advisor
The Rutgers Journal of Bioethics is an undergraduate ©2021 The Rutgers Journal of Bioethics. All copyrights
journal exploring the intersection of ethics, biology, to art or essays belong to their respective authors.
society, and public policy. It has been published each All other copyrights belong to The Rutgers Journal of
year since 2009. While the Journal solicits articles Bioethics. Please send all questions and comments to
from all persons wishing to participate in the open the above email address. Our sister organization, the
discussion on bioethics, it is managed by students at Bioethics Society of Rutgers University, meets every
Rutgers, the State University of New Jersey. The Jour- other Wednesday during the academic year at 9:00
nal is published by Premier Graphics (500 Central PM in Scott Hall on the College Ave. Campus at Rut-
Avenue, Atlantic Highlands, NJ 07716) and funded gers-New Brunswick (43 College Avenue, New Bruns-
through generous contributions from the Rutgers wick, NJ 08901). All are welcome to attend. Some-
University Student Assembly Allocations Board. The times we have pizza. Meeting details are available at
Journal welcomes all unsolicited original essays, book . We would
reviews, editorials, and art. To submit, please e-mail a like to thank Dr. Eric Singer and Dr. Michael Solomon
copy of your paper or a high-resolution image of your of Robert Wood Johnson University Hospital for their
work of art to . advice and support.
SPRING 2021 1
Letter from the Editor Letter from the Society
As a global pandemic and racial equity have taken center stage in our national We at the Bioethics Society aim to provide the student body at Rutgers with an
consciousness, bioethics has become deeply personal. Each of us has been forced to open forum where they can express their views on complex and controversial topics
consider how our individual actions contribute to—and whether they are obligated in bioethics. Our mission is to foster debate and bring to light issues that undergrad-
to contribute to—collective well-being. We have interrogated the privileges that have uates will often face only after they have joined the workforce. Over the course of
allowed some of us to stay silent and insulated while others’ bodies asymmetrically the past year, we have covered a diverse range of issues including the right to genetic
bear risk. privacy, access to healthcare for prisoners and the transfer of consent to surrogate
The past year has reminded us that science and medicine are inseparable from decision makers.
the people they affect and aim to serve. We have been given front-row seats to the At the surface, these topics may seem inconsequential, yet they get at the heart
development of COVID-19 vaccines, novel in both the technology they harness and of the field of bioethics, asking the most difficult questions in medicine and biotech-
the speed at which they were actualized. But the story does not end with successful nology. Should privacy in healthcare extend to our genetic makeup, even if it hinders
development. The next act will chronicle how COVID-19 vaccines will interact with scientific advancement? What are the rights of the disenfranchised in healthcare, if
people and societies and whether those interactions can manage to advance justice. any, and how do we guarantee them these rights? How do we ensure that the limits
Can these vaccines be distributed, both domestically and globally, in a manner that our institutions impose upon us to protect our health do not encroach upon our civil
does not coerce, exclude, or discriminate? Alexandra Deutsch, an associate editor liberties? Our discussions give members the opportunity to explore diverse angles
of the Journal, opens this volume with a critical examination of a past experiment and viewpoints from which to answer these essential questions. In doing so, we are
in inoculating the global population against smallpox. Next, an editorial by Daniel creating not only more compassionate healthcare providers and scientists, but crit-
Peltyszyn, our former managing design editor, presents a case for mandatory vac- ical thinkers well equipped to handle the challenges of technology and medicine.
cination. I hope you will find the dialogue between these two pieces engaging and In the past year, we have been forced to rapidly adapt to the COVID-19 pandem-
relevant. ic. As in person meetings and events were cancelled, the Bioethics Society moved to
The following articles in the 12th issue of The Rutgers Journal of Bioethics con- an online format. Despite this shift, the Society was able to connect with passionate
tinue to deal with the human consequences of incorporating technological advance- members of the Rutgers community who were excited to share their thoughts. As
ments into society. Christina Ren discusses how individuals interpret, grapple with, the pandemic changed how we engaged with each other, we thought about its effect
and construct meaning from genetic disease risk scores. Dr. Allie Dayno argues for on millions of healthcare providers and scientists. Many of the topics we considered,
newborn screening reform to better serve disadvantaged families. Drs. Janet Dolgin like healthcare prioritization and disease risks of the incarcerated, became critical
and Renee McLeod-Sordjan analyze the moral and legal liminal space occupied by questions to answer in our current situation.
cryopreserved embryos. The genetic testing and assisted reproductive technologies As times continue to change, we expect new, complex bioethical questions to
examined in these articles do not exist in a vacuum but instead interface daily with arise. Thanks to the support of our dedicated executive board and members, we
healthcare professionals and patients, whose lives are personally impacted. know that there will always be a place at Rutgers for students to discuss and at-
I am so grateful to each contributing author for placing their trust in us to make tempt to solve these questions. As we look to the future, we move forward with hope,
their voice heard, and to each member of the Journal staff for being thoughtful, adapt- knowing that these same dedicated members of our society will go on to become
able, and present throughout the publication process. I also must thank the Society leaders of their fields, leading with compassion and wisdom. Finally, we would like
and our publisher for the integral roles they have played in bringing this issue to life. to thank the Journal executive board for their hard work in putting together Volume
I hope that Volume XII of The Rutgers Journal of Bioethics contributes mean- XII of The Rutgers Journal of Bioethics. We encourage you to thoughtfully consider
ingfully to an ever-growing dialogue about the interface between science, medicine, the points made in this volume and to join in these important conversations with us.
and humanity. By analyzing the imprint of technology on human experience, we can
design and implement medical technology to better serve all people. Rishabh Hirday & Rushabh Mehta
Presidents, Bioethics Society of Rutgers University
Cindy Song
Editor-in-Chief, The Rutgers Journal of Bioethics
2 THE RUTGERS JOURNAL OF BIOETHICS SPRING 2021 3
Editorial
Questioning the Motives and Methods of
Imperialist Vaccination Programs
the Rutgers by Alexandra Deutsch†
S
ince Edward Jenner’s 1798 inven- the empires’ own goals in the regions
Journal of Bioethics tion of the smallpox vaccine, his
discovery and the public health
and, in the case of Great Britain in India,
reinforced racist stereotypes that could
Volume XII, Spring 2021 programs that disseminated it have prove harmful to the health and auton-
saved millions of lives and served as omy of the indigenous population. I will
Editorials lasting examples of international coop- then explore the World Health Organi-
eration and philanthropy [1]. However, zation’s (WHO) 1973 Smallpox Eradica-
Questioning the Motives and Methods of 5 some of these smallpox vaccination pro- tion Program (SEP) in eastern India and
Imperialistic Vaccination Programs grams were motivated by and furthered Bangladesh and show how the racism
Alexandra Deutsch non-humanitarian goals, especially and self-righteousness of American phy-
Compulsory Vaccinations Can Be Ethically Justifiable 10 those programs introduced by empires sicians led to coercive smallpox vaccina-
to their colonial subjects. While “im- tions. By discussing these four examples,
Daniel Peltyszyn
perial medicine” prevented and cured I aim to begin a dialogue regarding the
diseases and established frameworks for bioethics of imperialist vaccination cam-
Articles public health, it also strengthened the paigns and encourage people to reexam-
Psychosocial Impacts and Behavioral Outcomes Associated With 16 colonizer’s hold, deprived indigenous ine the motives and methods of vaccina-
Receiving Polygenic Risk Scores peoples of their culture, and enforced a tion programs.
Christina Ren white savior myth that asserted the intel- In one of the world’s first vaccination
lectual, medical, and moral supremacy campaigns, Charles IV of Spain tasked
Unwinding the Ethical Concerns of Newborn Screening in the 28 of Western physicians over their indig- the physician Francisco Xavier Balmis y
Age of Genomic Medicine enous counterparts. In this essay, I will Berenguer to lead the Royal Philanthrop-
first explore three early, non-coercive ic Expedition of the Vaccine in 1803.
Allie Dayno
smallpox vaccination campaigns im- Balmis’s mission was to bring the small-
The Determination of Embryonic Status: Merging 39 plemented by colonial powers in Latin pox vaccine to New Spain and the Phil-
Context and Whim America, the American West, and south- ippines while training local doctors in its
Janet Dolgin and Renee McLeod-Sordjan ern India. These campaigns furthered administration and establishing Vacci-
Cover: Trifo, K. (2020). People waiting at a crossroads during a coronavirus lockdown (edit- † Alexandra Deutsch is a junior in the Honors College in the School of Environmental and
ed). Photograph. Retrieved from https://unsplash.com/photos/1BS9SmgovrY. Biological Sciences at Rutgers University. She is majoring in English and Biochemistry with
a focus in Microbial Systems. She is interested in the convergence of science and history.
4 THE RUTGERS JOURNAL OF BIOETHICS SPRING 2021 5
nation Boards that would lay the foun- ment to vegetarianism [2, 5]. Second, tlers from smallpox outbreaks, strength- gists violated the autonomy of eastern
dations for future public health institu- the indigenous population was leery en the relationship between the U.S. and Indians and Bangladeshis through co-
tions [2, 3]. The Expedition vaccinated of placing their physical wellbeing into Native Americans, and stake a claim on ercive smallpox vaccinations. Although
over 30,000 people and was praised for the hands of foreign oppressors. Some land disputed by nations such as Mexico WHO personnel were meant to coop-
its humanitarian purpose, widespread Indians even referred to the scars that and Great Britain. It is also important to erate with local health workers, they of-
success, and public health legacy [4, 3]. remained from smallpox vaccination as note that the vaccination campaign hap- ten took the lead in identifying infected
However, it was not motivated by only “the Company’s chop” and considered pened concurrently with the implemen- individuals, quarantining those individ-
philanthropic intentions. At the time, them marks of colonization [5]. Finally, uals’ close contacts, and vaccinating all
smallpox was diminishing the colonial there were concerns about the safety of villagers [8]. Foster et al. (2011) main-
population that worked in New Spain’s the smallpox vaccine, which could cause tain that one of the qualities that ren-
mines—the source of its gold and other blindness, convulsions, quadriplegia, dered the SEP in Bangladesh so effective
precious metals [3]. Saving New Spain and brain damage [2, 6]. However, the was “[n]ot accepting no as an answer”
from smallpox meant saving Spain’s British narrative did not frame indige- [9]. By this, Foster et al. (2011) refer to
economy. nous “non-acceptance” in these terms. WHO personnels’ determination and
In the same year that the Expedi- Because of the groundbreaking nature initiative in the face of administrative
tion set sail, the British Medical Board of vaccination and its positive effects on inadequacy and financial deficiencies,
in southern India shifted from a policy the public health, the British believed but this determination also applied to
of variolation to one of vaccination and their role was that of benevolent mod- their behavior when confronted with
faced “non-acceptance” by the indige- ernizers struggling against what they indigenous noncompliance and resis-
nous population [2]. Variolation was a often termed “indigenous prejudice and tance. In Greenough (1995), T. Stephen
centuries-old medical tradition that was superstition” [2]. In turn, this framing Jones, one of the WHO personnel in the
frequently integrated into religious cus- enforced a power dynamic that legiti- eastern Indian state of Bihar, and Stanley
toms [2]. However, because it used the mized the British colonial government’s Music, a WHO epidemiologist in Ban-
smallpox virus to impart immunity, it belief that it had a right to rule the col- gladesh, recount breaking into houses
Hicks, J./Centers for Disease Control and Pre-
was a far more dangerous inoculation ony [2, 5]. Such righteousness, built on and forcefully vaccinating individuals in
vention. (1973). Child with smallpox, Bangla-
technique than vaccination, which used an asymmetrical power structure com- desh. Photograph. Retrieved from https://phil. “military style attack[s] on infected vil-
the cowpox virus [5]. Brimnes (2004) pounded by racial and religious discrim- cdc.gov/details.aspx?pid=3265. lages.” As Jones once described: “I was
attributes southern Indian “non-accep- ination, was a harbinger of later small- a white man in that society, and I could
tance” to a number of factors. First, there pox vaccination programs in India and tation of the Indian Removal Act, which do things that others couldn’t do… and
were religious concerns: vaccination was Bangladesh. dispossessed Native Americans of their get away with it” [8]. Indeed, although a
far less ritualized than variolation, and Isenberg (2017) discusses another land through coercive means [7]. The legal case was brought against Music for
the arm-to-arm nature of early vaccina- empire’s indigenous vaccination pro- simultaneous nature of these programs his actions, it was later dismissed.
tion (in which the contents of a cowpox gram. In the 1830s, doctors from the raises more questions about the bioeth- The power and violence that WHO
pustule on one person’s arm were trans- U.S. Office of Indian Affairs vaccinat- ics of imperialist vaccination programs. personnel wielded in eastern India and
ferred to an incision on another person’s ed between 39,000 and 54,000 Native Vaccination programs that are im- Bangladesh came from a utilitarian de-
arm) and its use of the cowpox virus led Americans against smallpox in the plemented in the name of humanitari- sire to do good, however, they disregard-
to religious unease in the Hindu pop- American West. Similar to New Spain anism but clouded by imperialist goals, ed local norms and religious beliefs as
ulation. They were concerned about and India three decades earlier, this vac- racism, or self-righteousness risk more “irrational,” “archaic,” and “ignoran[t]”
the vaccine being exchanged between cination program was not coercive yet overt unethical practices. This is demon- [8]. Joshua Pryor, another WHO epide-
people of different castes and the use not completely humanitarian, either. strated in the WHO’s 1973 Smallpox miologist in Bihar, viewed indigenous
of animal matter, which some worried The U.S. government hoped that the Eradication Program (SEP), in which medical practices as “high level quack-
could violate their religious commit- program would protect American set- American physicians and epidemiolo- ery” and suspected local health workers
6 THE RUTGERS JOURNAL OF BIOETHICS SPRING 2021 7
Ethics, 2(2), 104-111. https://doi.org/10.20529/ [8] Greenough, P. (1995). Intimidation, co-
ijme.2017.025. ercion and resistance in the final stages of
[2] Brimnes, N. (2004). Variolation, vaccination, the South Asian Smallpox Eradication Cam-
and popular resistance in early colonial South paign, 1973-1975. Social Science and Medicine,
India. Medical History, 48(2), 199-228. https:// 41(5), 633-645. https://doi.org/10.1016/0277-
doi.org/10.1017/S0025727300000107. 9536(95)00035-6.
[3] Soto-Perez-de-Celis, E. (2008). The Roy- [9] Foster, S. O., Hughes, K., Tarantola, D., &
al Philanthropic Expedition of theVaccine: A Glasser, J. W. (2011). Smallpox eradication
landmark in the history of public health. Post- in Bangladesh, 1972-1976. Vaccine, 29(4),
graduate Medical Journal, 84, 599-602. http:// D22-D29. https://doi.org/10.1016/j.vac-
doi.org/10.1136/pgmj.2008.069450. cine.2011.06.081.
[4] Franco-Peredes, C., Lammoglia, L., & San- [10] Dean, R. (2014). Stigmatization and denor-
tos-Preciado, J. (2005). The Spanish royal phil- malization as public health policies: Some Kan-
anthropic expedition to bring smallpox vacci- tian thoughts. Bioethics, 28(8), 414-419. https://
nation to the New World and Asia in the 19th doi.org/10.1111/bioe.12019.
century. Clinical Infectious Diseases, 41(9), 1285- [11] Bester, J. C. (2015). Vaccine refusal and
1289. https://doi.org/10.1086/496930. trust: The trouble with coercion and education
[5] Lee, D. & Fulford, T. (2000). The beast with- and suggestions for a cure. Bioethical Inquiry, 12,
Yanibel, H. (2020). Statue, Dominican Republic. Photograph. Retrieved from https://unsplash.com/ in: The imperial legacy of vaccination in history 555-559. https://doi.org/10.1007/s11673-015-
photos/UR35ArRoNaw. and literature. Literature and History , 9(1), 1-23. 9673-1.
https://doi.org/10.7227%2FLH.9.1.1. [12] Das, V., Das, R. K., & Cutinho, L. (2000).
[6] Lane, J. M., Ruben, F. L., Neff, J. M., & Mil- Disease control and immunisation: A socio-
of laziness, stupidity, and a “lack of sense Bester (2015) argues that ensuring suf- lar, D. D. (1969). Complications of smallpox logical enquiry. Economic and Political Weekly,
of responsibility” [8]. These sentiments ficient vaccination levels in a popula- vaccination. New England Journal of Medicine, 35(8/9), 625-632.
echo the British colonial authorities’ tion is a government’s ethical imperative 28(22), 1201-1208. https://doi.org/10.1056ne- http://www.jstor.com/stable/4408959.
views on variolation in the nineteenth [11]. In this way, each program fulfilled jm196911272812201. [13] Upshur, R. E. G. (2002). Principles for the
[7] Isenberg, A. C. (2017). An empire of rem- justification of public health intervention. Cana-
century. Jones remembers feeling “re- its ethical obligations. However, as edy: Vaccination, natives, and narratives in the dian Journal of Public Health/Revue Canadienne
ligiously fervid” in the service of this Das et al. (2000) argue, the good deeds North American West. Pacific Historical Re- de Santé Publique, 93(2), 101-103. https://www.
utilitarian ideal that advocated vacci- and goodwill of the vaccinators do not view, 86(1), 84-113. https://doi.org/10.1525/ jstor.com/stable/41993451.
nation for everyone, regardless of con- eliminate lasting questions of intent, phr.2017.86.1.84.
sent or immune status. He recalls feel- consent, sovereignty, and culture [12].
ing like a “crusader” and admits that he The bioethics of public health policies
“did some very excessive things in the often raise questions about the auton-
name of righteousness” [8]. By stigma- omy of the individual, and question-
tizing indigenous individuals and their ing the motive of the vaccinator adds
customs, the British colonial authorities to this complex query [13]. By asking
and WHO personnel “intrinsically vi- these questions about our past, we may
olate[d] the dignity of the stigmatized” find answers to our current and future
[10]. By using coercion to vaccinate un- concerns regarding vaccine distribution
willing villagers, WHO personnel vio- and administration in a pandemic and
lated patient autonomy, raising serious post-pandemic world.
questions about whether those person-
nel failed in their ethical obligations. REFERENCES
These four smallpox vaccination [1] Juran, L., Trivedi, J., & Kolivras, K. (2017).
Considering the “public” in public health: Pop-
programs were conducted to protect in- ular resistance to the Smallpox Eradication
dividuals from the scourge of disease. Programme in India. Indian Journal of Medical
8 THE RUTGERS JOURNAL OF BIOETHICS SPRING 2021 9
Editorial allow religious objections to vaccina-
tion. Some states, including Pennsylva-
nia, Ohio, and Texas, permit personal
objections to vaccination apart from
traditional religious beliefs [9].
Given the ongoing coronavirus dis-
ease 2019 (COVID-19) pandemic, some
entities are mandating specific vaccina-
Compulsory Vaccinations Can Be Ethically Justifiable tions. On August 19, 2020, Massachu-
by Daniel Peltyszyn† setts public health officials announced
that all children over six months old
I
who attend child care, pre-school, K-12,
nfectious diseases pose an existential which significant morbidity is an out-
and universities must be immunized
threat to human existence. However, come of insufficient vaccination against
for influenza [10]. Many universities,
our response to this threat is under- preventable diseases. Additionally, these
including Syracuse University, Indiana
whelming if one considers vaccination less than favorable vaccination rates mir-
University, Cornell University, Purdue
rates a proxy for infectious disease pre- ror a concerning trend in public opinion Boilly, L. L. (1827). La vaccine. Lithograph. University, Johns Hopkins University,
paredness. Vaccination, in particular, in the United States in which fewer peo- Retrieved from http://resource.nlm.nih.
and the University of North Carolina
represents a safe, well-studied form of ple recognize the importance of vacci- gov/101393085.
at Charlotte, have issued similar vacci-
protection against specific transmissible nation. According to a study conducted
were entirely unvaccinated against it [7]. nation mandates [11]. Even before the
pathogens. by the Gallup Poll in 2019, only 84% of
This event indicates that even seemingly onset of the COVID-19 pandemic, some
Despite the proven efficacy of vac- Americans say it is important that par-
small, localized pockets of unvaccinated states had already passed or considered
cines, immunization rates remain low ents vaccinate their children, down from
individuals can bring about significant legislation that would do away with ex-
for certain preventable diseases. For ex- 94% in 2001 [5].
disease incidence. emptions from vaccination based on re-
ample, the Centers for Disease Control That said, not all vaccines are associ-
Drastic differences in immunization ligious or personal beliefs [9]. Given the
and Prevention (CDC) estimates that ated with such low administration rates.
rates against various infectious diseas- potentially controversial nature of such
only 37.1% of adults over 18 received According to the CDC, 91.5% of chil-
es exist, at least in part, due to legisla- a measure, let us consider what compul-
an influenza vaccine for the 2017-2018 dren between 19 and 35 months of age
tion or workplace-level expectations. sory vaccines might look like from an
flu season [1]. That same season, influ- received at least one dose of the MMR
Some employers, especially those in the ethical standpoint.
enza claimed the lives of an estimated (measles, mumps, rubella) vaccine in
61,000 Americans [2]. Relatedly, only 2017 [6]. This relatively high immuniza- healthcare industry, require their em-
ployees to receive the annual flu vaccine. ETHICAL CONSIDERATIONS
21.5% of adults aged 18-26 received tion rate is still not high enough to pre-
Similarly, children attending public or New vaccines undergo a rigorous ap-
the recommended number of doses of vent local outbreaks of disease. Between
private schools must be immunized to proval process overseen by the Food and
the HPV vaccine in 2018 [3]. Conse- December 2014 and February 2015, an
some extent. In New Jersey, for example, Drug Administration’s (FDA) Center
quently, the CDC estimates that “about outbreak of measles emerged in Califor-
students in grades kindergarten through for Biologics Evaluation and Research.
45,300 HPV-associated cancers occur in nia, linked to Disney’s theme parks. This
12 (K-12) are required by law to be vac- This process includes a “clinical de-
the United States each year” [4]. These outbreak led to over 100 cases of mea-
cinated against polio, chickenpox, hep- velopment” phase that is itself divided
two examples demonstrate a pattern in sles, and, of those affected, nearly half
atitis B, meningitis, tetanus, diphtheria, into three stages. During each of these
acellular pertussis, measles, mumps, and stages, the vaccine is progressively ad-
† Daniel Peltyszyn graduated from the Rutgers School of Environmental and Biological rubella [8]. While medical exemptions ministered to a larger population until
Sciences in May 2019 with a bachelor’s degree in microbiology and a minor degree in music. it is ultimately approved for widespread
During his time at Rutgers, Daniel served as the managing design editor for volumes IX and
from vaccination exist and are accept-
X of The Rutgers Journal of Bioethics. He is interested in pursuing a career in healthcare. able for those who qualify, most states distribution [12]. For the purpose of this
10 THE RUTGERS JOURNAL OF BIOETHICS SPRING 2021 11
thought experiment, let us assume that a harm. While an individual vaccine’s ef- raises an interesting point regarding the been demonstrated to be safe and effec-
given vaccine is safe and effective at pre- ficacy might be brought into question, practice of vaccination. Decades of im- tive. Consequently, I would argue that
venting infection by a particular patho- the concept of vaccination itself has munology research have demonstrat- compulsory vaccinations satisfy the bio-
gen. What might obligatory vaccination been validated. Historically successful ed that vaccination is safe and effective ethical pillar of non-maleficence, under
look like from a bioethical perspective? vaccination efforts offer the most robust at preventing or reducing the severity the condition that the vaccine has un-
support for widespread, compulsory of disease. Therefore, bearing such re- dergone the meticulous vetting process.
Autonomy immunization. In particular, the world- search in mind, the present-day insti- Additional resources should then be
As it pertains to patients in a healthcare wide immunization campaign against tution of medicine is bound by a moral funneled into public health education to
setting, autonomy refers to patients’ smallpox ultimately led to the World obligation to vaccinate as a means of se- alleviate the public’s concerns.
right to make decisions regarding their Health Assembly formally announc- curing the public’s well-being. Compul-
own health care options. Compulsory ing the disease’s eradication on May 8, sory vaccination fulfills that obligation Justice
vaccinations constitute an infringement 1980 [13]. Similar present-day vaccina- for individuals who receive the vaccine With respect to bioethics, justice refers
on this right, thereby violating the bio- tion campaigns might also successfully and for those who cannot be vaccinated to the concept of fairness and the appro-
ethical pillar of autonomy. This violation eliminate, if not eradicate, other com- but benefit from herd immunity. priate allocation of resources, including
likely requires little further elaboration, municable diseases. Therefore, as far as Despite the strong historical record but not limited to, medical supplies,
as compulsory vaccination, whether compulsory vaccination is concerned, of immunization, a non-negligible pro- equipment, and personnel. The impact
mandated by legislation or some other the intention of doing good is present, portion of the population questions vac- of mandatory vaccinations on this bio-
authority, eliminates patients’ ability to thereby upholding the bioethical pillar cines’ safety and efficacy. While these ethical tenet can be trickier to predict,
control their own health-related choic- of beneficence. concerns vary in nature, they often re- as several important questions need to
es. Despite this infringement on patient The concept of beneficence extends volve around fear of unwanted allergic be addressed. Firstly, and perhaps most
autonomy, are mandatory vaccinations beyond simple intention to include acts reactions, false threats of medical risks importantly, on whom does the financial
still justifiable? mandated by moral obligation. The Bel- like autism, pharmaceutical companies’ burden of mandatory vaccination fall?
mont Report, which establishes ethical motives, and distrust of science [15]. Will the individual patient be responsi-
Beneficence & Non-maleficence guidelines to protect human research Unfortunately, when enough like-mind- ble for the cost, or will the vaccination
Beneficence generally refers to the in- subjects, maintains that beneficence ed people are in the same place simul- program be government-sponsored? In
tention of doing good, while non-ma- includes the obligation “to secure [hu- taneously, the consequences can be sig- the United States, a monumental 27 mil-
leficence refers to minimizing potential mans’] well-being” [14]. This statement nificant, as seen in the 2014 outbreak of lion people do not have health insurance
measles in California referenced earlier. [16]. Will they be expected to cover the
The question remains whether the cost of the vaccine out-of-pocket?
general public has a foundational under- Another major consideration in-
standing of the principles of vaccination volves the appropriate distribution of
and an awareness of the rigorous vac- the vaccine and questions regarding
cine approval process. Should people be access to healthcare. For patients living
given a choice to vaccinate or not vacci- in rural areas, will the vaccine be read-
nate, considering that they might hold a ily available? On average, Americans in
misinformed opinion? The FDA’s multi- rural communities live more than 10
step approval process for new vaccines miles away from the nearest hospital, as
provides ample opportunity to identify compared to 5.6 miles in suburban areas
serious safety concerns, well before the and 4.4 miles in urban areas [17]. Do the
vaccine is widely distributed and avail- individuals living in these communities
able to the general public. Therefore, have the time and means of transporta-
RF Studio. (2020). Person holding injection. Photograph. Retrieved from https://www.pexels.com/ once approved, the final product has tion to receive the vaccine?
photo/person-holding-injection-3825529.
12 THE RUTGERS JOURNAL OF BIOETHICS SPRING 2021 13
Finally, how will compulsory vacci- the well-studied science and the robust, mmwrhtml/mm6406a5.htm. [15] Boulanger, A. & Weatherspoon, D. (2017).
nations be enforced? If some individuals government-regulated vaccine approval [8] New Jersey Department of Health. (2020). Understanding Opposition to Vaccines. Health-
Summary of NJ school immunization require- line. https://www.healthline.com/health/vacci-
learn that their neighbor or colleague process serve as safeguards against un- ments. https://www.nj.gov/health/cd/docu- nations/opposition.
managed to circumvent vaccination, wanted medical risks that are often fab- ments/imm_requirements/k12_parents.pdf. [16] Berchik, E. R., Barnett, J. C., & Upton, R.
they will likely be less inclined to receive ricated or blown out of proportion by [9] National Conference of State Legislatures. D. (2019). Health insurance coverage in the
the vaccine themselves, especially if they skeptics. Therefore, I would argue that (2020). States with religious and philosophical United States: 2018. United States Census Bu-
question its safety. Will authorities imple- the benefits of mandatory vaccination— exemptions from school immunization require- reau. https://www.census.gov/library/publica-
ments. https://www.ncsl.org/research/health/ tions/2019/demo/p60-267.html.
ment formal sanctions, or will mandato- most especially the ability to curb the school-immunization-exemption-state-laws. [17] Lam, O., Broderick, B., & Toor, S. (2018).
ry vaccinations simply be “mandatory?” spread of communicable disease and to aspx. How far Americans live from the closest hospi-
In that case, is there even a point in pur- minimize disease morbidity and mortal- [10] Massachusetts Department of Public tal differs by community type. Pew Research
suing such vaccination campaigns, given ity—justify the practice, as long as spe- Health. (2020). Flu vaccine now required for Center. https://www.pewresearch.org/fact-
the likelihood of widespread non-com- cial attention is paid to concerns regard- all Massachusetts school students enrolled in tank/2018/12/12/how-far-americans-live-from-
child care, pre-school, K-12, and post-secondary the-closest-hospital-differs-by-community-
pliance? For such a variety of factors, the ing healthcare costs and accessibility. institutions. https://www.mass.gov/news/flu- type.
effect of compulsory vaccination on the vaccine-now-required-for-all-massachusetts-
principle of bioethical justice is difficult REFERENCES
school-students-enrolled-in-child-care-pre.
[1] Centers for Disease Control and Preven-
to anticipate. tion. (2018). Estimates of influenza vaccination
[11] Perez Jr., J. (2020). ‘Twindemic’ test:
Massachusetts, many colleges mandate
coverage among adults—United States, 2017–18
winter flu shots. Politico. https://www.po-
CONCLUSION flu season. https://www.cdc.gov/flu/fluvaxview/
litico.com/news/2020/10/09/colleges-re-
History reminds the present that vac- coverage-1718estimates.htm.
quire-flu-shots-coronavirus-428407.
cines have the potential to provide sig- [2] Centers for Disease Control and Prevention.
[12] Centers for Disease Control and Preven-
(2019). Estimated influenza illnesses, medical
nificant protection from infectious visits, hospitalizations, and deaths in the Unit-
tion. (2014). Vaccine testing and the approval
diseases. Only 100 years ago, smallpox process. https://www.cdc.gov/vaccines/basics/
ed States—2017–2018 influenza season. https://
test-approve.html.
was still rampant throughout the Unit- www.cdc.gov/flu/about/burden/2017-2018.htm.
[13] Centers for Disease Control and Preven-
ed States. Now, 40 years after its global [3] Boersma, P. & Black, L. I. (2020). Human
tion. (2016). History of smallpox. https://www.
eradication, smallpox no longer poses papillomavirus vaccination among adults aged
cdc.gov/smallpox/history/history.html.
18−26, 2013−2018. Centers for Disease Con-
a threat. Despite its apparent benefits, trol and Prevention. https://www.cdc.gov/nchs/
[14] Ryan, K. J., Brady, J. V., Cooke, R. E., Height,
vaccination is seemingly taken less seri- D. I., Jonsen, A. R., King, P., … & Turtle, R. H.
data/databriefs/db354-h.pdf.
(1979). The Belmont Report. Office for Human
ously by the general public. Compulsory [4] Centers for Disease Control and Prevention.
Research Protections. https://www.hhs.gov/
vaccinations offer a potential solution (2020). HPV-associated cancer statistics. https://
ohrp/regulations-and-policy/belmont-report/
to this problem, but they would likely www.cdc.gov/cancer/hpv/statistics/index.htm.
read-the-belmont-report/index.html.
[5] Reinhart, R. (2020). Fewer in U.S. continue
face fierce resistance from a portion of to see vaccines as important. Gallup. https://
the public questioning their safety and news.gallup.com/poll/276929/fewer-contin-
efficacy. Medical exemptions would still ue-vaccines-important.aspx.
be permitted for individuals with legit- [6] Hill, H. A., Elam-Evans, L. D., Yankey, D.,
imate contraindications to vaccination, Singleton, J. A., & Kang, Y. (2018). Vaccination
coverage among children aged 19–35 months—
while exemptions based on religious or United States, 2017. Centers for Disease Control
personal beliefs would be eliminated. and Prevention. https://www.cdc.gov/mmwr/
From a bioethical standpoint, mandato- volumes/67/wr/mm6740a4.htm.
ry vaccination unquestionably infringes [7] Zipprich, J., Winter, K., Hacker, J., Xia, D.,
on patients’ right to autonomy, and its Watt, J., & Harriman, K. (2015). Measles out-
break—California, December 2014–February
relationship with bioethical justice de- 2015. Centers for Disease Control and Pre-
pends on numerous factors. However, vention. https://www.cdc.gov/mmwr/preview/
14 THE RUTGERS JOURNAL OF BIOETHICS SPRING 2021 15
Article Polygenic risk profiling, therefore, has the potential to provide person-
alized disease risk to individuals. This information could be valuable in
informing appropriate preventative interventions and screening, assessing
benefit from lifestyle changes, predicting treatment response outcomes, and
modifying familial disease risk [2]. Together, these actionable measures may
lead to clinical decision-making changes and improved individual and popu-
Psychosocial Impact and Behavioral lation-level health. Polygenic testing is now becoming increasingly available,
with several commercial genetic testing laboratories, direct-to-consumer,
Outcomes Associated With Receiving and researchers offering polygenic risk score (PRS) testing [3, 4, 5, 6, 7].
The recent widespread implementation of PRS has sparked an emerging
Polygenic Risk Scores body of research assessing how individuals respond to receiving such poly-
genic risk information. This paper will focus on 1) reviewing current liter-
by Christina Ren† ature on the psychosocial impact and behavioral outcomes associated with
receiving PRS, 2) exploring the psychosocial challenges and concerns of uti-
lizing PRS, and lastly, 3) discussing how genetic counselors can incorporate
To date, clinical genetics is primarily focused on identifying rare genetic vari-
PRS into practice as applications continue to expand in the coming years.
ants that confer a large effect on disease risk. However, the genetic basis of
common complex diseases is largely determined by the cumulative effect of
PSYCHOSOCIAL IMPACT OF RECEIVING POLYGENIC
many common variants across the entire genome. While individually each
RISK SCORES
of these associated single nucleotide polymorphisms (SNPs) has a small im-
There are two primary areas in which researchers have assessed the psycho-
pact on disease risk, their combined effect, calculated as a polygenic risk score
social impact of receiving PRS. The first area involves inviting individuals
(PRS), is large. The generation of PRS data and their predictive ability for dis-
from families with a high risk of specific disease but whose previous ge-
ease risk is rapidly evolving and improving. As polygenic testing is implement-
netic testing results were uninformative. For these individuals, the etiology
ed more broadly, there is a critical need to assess how this new type of genetic
of high familial disease risk remains unexplained. A second research area
information is being communicated to people and how individuals respond to
aims to model how groups of higher-risk individuals can be identified in the
the knowledge of their probabilistic susceptibility to disease. With the avail-
general population for population screening. Population screening does not
ability of polygenic testing pushed to the forefront of genomic interpretation
require individuals to have a previous personal or family disease history.
for complex conditions, genetic counselors need to consider how to apply and
manage this information in various settings.
1) Individuals at High Risk of Cancer With Previous Uninformative
R
Genetic Testing
ecent efforts have shown that polygenic risk scores for common An active area of research for utilization of PRS information is in clarifying
diseases like breast cancer, coronary artery disease (CAD), and individual genetic risk from families with a personal or strong family his-
type 2 diabetes can now identify a substantially larger fraction of tory of cancer. Thus far, less than 30% of familial breast cancer cases can be
the population than is found by rare monogenic mutations, at comparable explained by a pathogenic variant in a moderate-to-high cancer risk gene
or greater disease risk. For instance, data suggests that 8% of the general [8]. Currently, polygenic factors can help explain an estimated additional
population has over a three-fold increased risk for CAD [1]. 18% of the genetic component in familial breast cancer risk [9]. The Vari-
ants in Practice Psychosocial Study (ViPPs) led by researchers at the Peter
† Christina Ren, MS is a board-certified and licensed genetic counselor. She received MacCallum Cancer Centre in Australia have invited 400 women with either
her BS in Biology from Stanford University and her MS in Genetic Counseling a personal or family history of breast cancer from six familial cancer centers
from California State University, Stanislaus where she trained and worked at Kaiser (FCCs) to receive their personalized PRS generated from 180 single nucleo-
Permanente, Pacific Fertility Center, Natera, and the University of California, San tide polymorphisms (SNPs) [10]. Those included in the ViPPs study includ-
Francisco. She currently works at Orchid Health, an early-stage genetics startup ed 200 women with a low polygenic breast cancer score and 200 women with
dedicated to improving health outcomes for the next generation.
16 THE RUTGERS JOURNAL OF BIOETHICS SPRING 2021 17a high polygenic breast cancer score. Genetic health professionals (genetic “You should have MRI’s, oh no you shouldn’t, you should have this
counselor or medical geneticists) at participating FCCs conducted in-person screening… oh you have got this lump and it’s probably nothing. You
genetic counseling sessions to return the personalized breast cancer PRS. know there’s heaps of uncertainty around it [breast cancer risk]… as
Participants were asked to complete three questionnaires to assess short- and I said to my partner on the way in there, I hope they just tell me high-
long-term psychological and behavioral outcomes over 12 months (before risk and I can just have a solid answer, so I kind of wanted certainty
receiving, 2 weeks after, and 12 months after receiving their result). Subsets from it…” –Brittany, 36 years, Unaffected/Low PRS [12]
of these participants were invited for interviews to explore women’s experi- Prior lived experience with breast cancer was critical in informing how
ences receiving their PRS qualitatively. Responses of unaffected and affected women responded and made sense of their PRS. Those who had a breast
women at different levels of polygenic risk were compared. A series of papers cancer diagnosis felt that receiving a high PRS result helped give an etiologi-
have published these follow-up studies as part of ViPPs [11, 12, 13]. cal explanation for why they went through such a traumatic and challenging
event. Their previous uninformative genetic testing did not explain their di-
agnosis. Some also expressed that their high PRS result absolved them from
past blame for their diagnosis. However, confronting reawakened memories
and lived experiences of a breast cancer diagnosis can be distressing for af-
fected individuals [11, 12]. Learning about an ongoing increased recurrence
risk of primary breast cancer can also be initially shocking for some. Many
also hoped that, since PRS is personalized to the individual, their relatives
would have a lower risk for the disease:
“…I suppose the fact that they were saying that, you know the vari-
ables can cluster in one person I guess gave me some reassurance that
just because I have high risk of something, they [sisters] are not going
to as well, and same with my children.” –Melissa, 42 years, Affected/
High PRS [12]
For unaffected participants who received a high PRS, all women described
not being surprised due to their strong family history of breast cancer. For
them, it validated their previous existing risk perception. No individuals re-
ported levels of distress, and many were relieved to have information to help
them make sense of their background familial breast cancer risk. Some ex-
Samkov, I. (2020). Person in black long sleeve shirt and silver ring. Photograph. Retrieved
from https://www.pexels.com/photo/person-in-black-long-sleeve-shirt-and-silver- pressed that for some time, they felt they were “off the hook” because their
ring-6436185. affected relatives had tested negative for BRCA1/2, even though these were
uninformative negative results:
The most recent study from Yanes et al. showed that women at high risk of “…once my sister got sick [breast cancer]… I knew something was
breast cancer who previously received uninformative genetic testing results wrong with the BRCA1 and 2 … in ‘97 it wasn’t that I was lead [sic]
are highly motivated and receptive to new genetic information that clarifies to believe, but it seemed very clear cut: you either carry the gene or
and reduces uncertainty about their risk level [12]. When asked about their not. So my assumption was I was just like anyone else in the general
decision to receive their PRS upon invitation, most spoke about their desire population for that small period.” —Julie, relative risk (RR)1 1.5 [11]
to know and their belief that “knowledge is power” [12]. Women who received a low PRS felt optimistic about their result, but some
For unaffected participants, their relatives’ uninformative BRCA1/2 re- struggled to put this information into context, given their breast cancer fam-
sult had been unsettling for them. They faced a great deal of uncertainty ily history. Some relied on the multifactorial nature of breast cancer and that
about their risk level and how to manage their breast cancer risk. Therefore,
many were motivated to receive their PRS, even if that meant being told they
1
Relative risk (RR) of breast cancer in the average general population is 1.0. A relative risk
above 1.0 indicates an above average of breast cancer [11].
were at higher risk for breast cancer:
18 THE RUTGERS JOURNAL OF BIOETHICS SPRING 2021 19PRS was just one contributing factor in reconciling the difference between the ongoing PROFILE study led by the Institute of Cancer Research in the
PRS and family history. Others felt they needed additional information like U.K. assessing the impact on prostate screening and genetic profiling, the
their affected relative’s PRS. One individual who received a low PRS did not psychosocial arm of the study found that participants did not experience
feel reassured about her risk unless her mother, who had breast cancer, also distress and were reassured upon learning about their PRS risk information
underwent polygenic testing and had a high PRS. Indeed, there is no good [14, 15]. Like the ViPPs study, receiving personalized PRS did not influence
“true negative” for poly- their prostate screening intentions, and family experience with affected rel-
genic risk. PRS is de- atives was the strongest influencing factor in participants’ risk perceptions.
rived from a combina- Therefore, interpretation can vary even between men who received similar
tion of maternally and PRS risk—one man interpreted a two-fold increased risk as evidence that he
paternally inherited would get prostate cancer. At the same time, another felt reassured by “only”
variants that can “clus- a two-fold risk as it was much lower than he had anticipated [14].
ter unevenly” in any one The impact of experiential knowledge and its precedence over any ob-
individual in the family jective clinical estimates of risk in PRS studies assessing people’s response is
by chance. The proba- evident. As will be discussed in the last section on genetic counseling prac-
bilistic nature of PRS is tice, it is critical to explore and reflect on patients’ lived experiences to help
uniquely different from contextualize the new genetic information provided [16].
the binary approach of
identifying monogen- 2) Population Screening: Identifying At-Risk Subgroups in the
ic pathogenic variants. General Population
For monogenic vari- Another area of application for PRS is population screening. If polygenic
ants, familial variant National Cancer Institute. (2020). DNA genotyping and testing is extended to the general public, personalized screening programs
testing can determine sequencing. Photograph. Retrieved from https://unsplash. based on genetic risk can be implemented, with increased screening and risk
whether an individual com/photos/fd0b-Bl4cFc. management strategies for those at higher risk. For example, in the ViPPs
either has the variant(s) study, affected women who were diagnosed with aggressive cancers before
or not. All participants understood that a low PRS meant that their risk was becoming eligible for baseline population screening felt strongly that poly-
lower than that of the baseline risk for the general population (12%), but that genic testing would have allowed them and others like them access to earlier
it did not mean they had “no risk” [12]. screening and diagnosis [12].
Interestingly, receiving PRS information had little impact on partic- To date, only a few PRS studies are assessing psychosocial responses that
ipants’ behavior with respect to breast cancer risk management. Instead, have recruited individuals to represent the broader public outside the high
participants’ prior lived experiences more strongly influenced their manage- familial risk context. In an ongoing study called GeneRISK, led by a team at
ment and screening decisions. Those who received high PRS felt validat- the Institute for Molecular Medicine Finland at the University of Helsinki,
ed and that it was important for them to stay vigilant and continue breast over 7,300 people have received information about their risk of heart disease
screening. All participants with low PRS said they would continue with their based on both clinical factors and polygenic profiling [17]. About a third of
current cancer risk management recommended by their clinician [12]. Since participants were told they have a higher risk of developing cardiovascu-
guidelines for increased screening for individuals with high PRS is not yet lar disease (CVD). A follow-up questionnaire, 18 months after results were
established, it does not seem that unaffected participants with high PRS have given, showed a vast majority of people found this genetic risk information
discussed chemoprevention and increased surveillance options in addition useful and motivating. Of the over 5,100 who responded to the question-
to their current risk management strategy. naire, 89% said their personal risk information was easy to understand, 22%
These findings from ViPPs are mostly consistent with previous PRS stud- found the results to be unexpected, 29% said the results were of concern to
ies in other familial cancer settings, including unaffected men with a fam- them, and 89% said this information motivated them to take better care of
ily history of prostate cancer and no identified hereditary cancer risk. In their health [17].
20 THE RUTGERS JOURNAL OF BIOETHICS SPRING 2021 21Researchers conducting the GeneRISK study found that individuals with against either obesity or lower exercise capacity, it altered how they respond-
the highest PRS had the most positive changes in their health behavior in ed to fullness after a meal or to exercise [20]. In other words, the information
assessing behavioral outcomes. 36% of those with PRS risk for CVD greater itself can change an individual’s perceived genetic risk and impact outcomes
than 10% had lowered their body weight, stopped smoking, or seen a physi- irrespective of, and sometimes greater than, the effects associated with “ac-
cian. By contrast, only 21% of those with lower CVD risk had taken any of tual” genetic risk.
these risk-reducing behaviors [17]. A follow-up study, conducted 1.5 years Similar studies have found that when people receive results that impact
after results were communicated to participants, found that these favor- perceived genetic risk, this affects self-perception and objective cognitive
able behavioral changes were sustained—42.6% of individuals at high CVD measures on conditions like Alzheimer’s disease, depression, and alcohol-
risk made concrete health changes such as reported weight loss or smoking ism [21, 22, 23]. The caveat and limitations of these studies are that the ge-
cessation, compared to only 33.5% of individuals at low or average CVD netic risk only used single high-risk genotypes, like ApoE4 (a risk factor for
risk [18]. While this study certainly shows how communicating combined Alzheimer’s disease), FTO (a risk factor for obesity), and CREB1 (associated
polygenic and clinical risk information for complex diseases like CVD can with poorer aerobic exercise), that have relatively small effect sizes compared
motivate individuals to make lifestyle changes, it is unclear how this might to their associated trait. Furthermore, research on how genetic information
extend to broader populations in other countries like the United States. alters health outcomes has been limited to conditions in which psychologi-
Delivery of PRS to the general population has also been assessed in the cal mindset can have a larger immediate short-term influence on physiology,
context of melanoma risk. Recruited participants had no personal or family rather than conditions that are less likely to be influenced (i.e., tumor growth
history of melanoma. Quantitative scoring of participant response found an in cancer or CVD). Studies focused on cancer and CVD support this notion
overall positive experience that did not elicit high levels of distress or un- since their findings demonstrated that receiving PRS did not negatively im-
certainty [19]. This study also highlights how the perceived “severity” of a pact risk perceptions and health behavior, which contradicts these previous
specific condition may impact different expected emotional and psychoso- studies [15, 19, 17, 12].
cial responses. Given that melanoma was presented to participants as highly Nevertheless, these reports highlight that receiving information about
preventable through simple sun-related protection behaviors, there was less genetic risk is not innocuous and careful thought should be given to the po-
varying complexity and diversity of psychosocial reactions compared to oth- tential impact of receiving PRS for a range of different conditions.
er cancers like breast and prostate cancer as described previously [19].
Possibility of Misinterpreting Results
PSYCHOSOCIAL CHALLENGES AND CONCERNS OF Given the inherently probabilistic nature of PRS information, receiving such
UTILIZING PRS complex information may lead to a range of interpretations and potential
Much of the debate around PRS is centered around whether the calculation misinterpretations. For example, individuals who receive a low PRS may in-
and interpretation of such scores yield accurate predictive ability for disease terpret this result to mean “no risk.” On the opposite side of the spectrum,
risk. While the generation of PRS presents one set of technical challeng- individuals who receive a high PRS may interpret their results as determin-
es, another critical component to consider in the implementation of PRS istic. Such fatalistic beliefs may increase an individual’s sense of distress and
is the challenges and concerns posed in communicating and receiving PRS decrease feelings of self-efficacy and control. Current PRS studies detailed
information to individuals, including the potential to 1) change perceived above have not found evidence of these misunderstandings, and partici-
risk and impact objective physiological behavior (i.e., placebo and nocebo pants demonstrate accurate knowledge and understanding of their risk lev-
effect), 2) misinterpret the result, and 3) influence negative health behavior. el. Many were also astutely aware of the dynamic, evolving nature of PRS
information, and that new genetic variants will continue to be identified that
Learning About Genetic Risk Can Itself Impact Physiology, Behavior, and could change the sliding scale of these probabilistic results [14]. Limitations
Subjective Experience of these studies’ conclusions are that participants were mostly highly edu-
Previous reports have raised concerns that merely learning one’s genetic cated and of Caucasian ancestry, with many being active in cancer research
risk for disease impacts physiological, behavioral, and subjective outcomes. studies, having received genetic counseling before, or being registered on a
For example, a team of psychology researchers at Stanford found that when cancer research database [15, 19, 12]. More research is needed to assess re-
people were randomly assigned to receive either a genetic propensity for or sponses within the broader population outside of academic institutions and
22 THE RUTGERS JOURNAL OF BIOETHICS SPRING 2021 23You can also read
