Penn Healthcare Review Fall 2020 by Publications of the Wharton Undergraduate Healthcare Club

Wharton Undergraduate Healthcare Club Presents

2020 / Fall Issue

P EN N H EA LT H C A R E R EV I EW

THE PANDEMIC EDITION Features SOCIAL DISTANCING FINES W ILL NOT MOVE AMERICA FORWARDS, ONLY BACK BY CLAUDIA HEJAZI-GARCIA, P. 4 ALTERNATIVE THERAPIES FOR COVID-19: EFFECTIVE TREATMENTS OR COMPLEX HOAXES? BY HELEN WU, P. 6 1

Edit ors-in-Chief Gr ace M ock gmock@sas.upenn.edu

Neelu Palet i paleti9@sas.upenn.edu

Edit orial Board Clau dia Hejazi-Gar cia clh@sas.upenn.edu

LETTER FROM THE EDITORS Dear Readers,

Helen Wu yywu1118@sas.upenn.edu

Ibr ah im El-M or sy elibra@sas.upenn.edu

Tau ssia Boadi

We are proud to announce the launch of the Fall 2020 issue of Wharton Undergraduate Healthcare Club?s Penn Healthcare

boadit@sas.upenn.edu

Review. Throughout this semester, our journal has grown in many

San ya M eh t a

new directions, with the launch of the new PHR blog and the

mehsanya@wharton.upenn.edu

Jacob Keller jacokel@sas.upenn.edu

Dan a Kar son dkarson@sas.upenn.edu

expansion of our editorial team. We find ourselves amidst a critical period of the COVID-19 pandemic, where interdisciplinary discussions on healthcare access, equity, and quality are more important than ever. In this edition, our writers explore the various facets of vaccine development, treatment efficacy,

Design Team Lach lan Cor m ie

insurance regulation, and more topics that have surfaced this year. From articles analyzing the role of choice and health data

lcormie@sas.upenn.edu

policies in our market to the disproportionate racial effects of

Far h aan ah M oh ideen

early medical practices and current social distancing guidelines,

mofa@seas.upenn.edu

W rit ers

this publication presents a critical lens to healthcare in our country.

Clau dia Hejazi-Gar cia clh@sas.upenn.edu

We applaud the amazing work of our writers, editors, and

Helen Wu

designers, who have persistently shown their dedication and

yywu1118@sas.upenn.edu

Ibr ah im El-M or sy

passion for healthcare all while working in a virtual format. This

elibra@sas.upenn.edu

team introduces a range of diverse perspectives that bridge the

Tau ssia Boadi boadit@sas.upenn.edu

gaps between business and healthcare through each of their

San ya M eh t a

work. We hope this publication encourages you to reflect on

mehsanya@wharton.upenn.edu

these intersections of fields in healthcare and the effects on

Sn eh a Sebast ian snehaseb@sas.upenn.edu

different populations at this important time in history.

Jacob Keller jacokel@sas.upenn.edu

Dan a Kar son

Sincerely,

dkarson@sas.upenn.edu

M ar k Jack son

Neelu Paleti and Grace Mock

marjack@wharton.upenn.edu

Co-Editors in Chief 2

TABLE OF CONTENTS 4

Social Distancing Fines Will Not Move America Forwards, Only Back CLAUDIA HEJAZI-GARCIA

Alternative Therapies for COVID-19: Effective Treatments or Complete

Hoaxes? HELEN WU

Coronavirus Sets the Stage for Preventive Healthcare in the United States IBRAHIM EL-MORSY

Early Medicine: Predecessors of COVID-19?s Treatment of Black People TAUSSIA BOADI

The ?Race? to a Safe and Effective Vaccine in a Global Pandemic

CRISPR: The Revolutionary Pair of Genetic Scissors

The Illusion of Choice in Healthcare Plans

The Basics of the Affordable Care Act -- and its Ambiguous Future

The Health Data Market and its Biggest Stakeholders

SANYA MEHTA

SNEHA SEBASTIAN

JACOB KELLER

DANA KARSON

MARK JACKSON ALL SOURCES CAN BE ACCESSED VIA QR CODE ON THE LAST PAGE COVER 3

For this piece, I am debating the argument if/ if not fines should be mandatory in the United States for disobeying COVID-19 guidelines. My argument is that people of color would be targeted and therefore fines should not be enforced. The worldwide Black Lives Matter Movement has highlighted the racially motivated violence against Black people from incidents of police brutality through the history of the United States. Therefore, the concept of enacting fines and enforcing them against citizens to enforce COVID-19 guidelines calls into question the potential for discrimination and blatant racism. This act of enforcing fines would be harmful to communities of color and other underrepresented populations that have historically had racist interactions with law enforcement. As a manifestation of this bias, police have killed 839 people in 2020 and Black people have been 28%of those killed by police despite 2 WEBSITE.COM/MAGAZINE

being only 13%of the population.1 The act of fining citizens would create fear in people of color, specifically Black people, that would potentially be targeted because of their skin color, instead of their individual actions. Clearly, recent actions such as the murder of George Floyd have once again proven the existence of such discrimination and bias in the

police departments across the nation. Once again, people of color are being targeted with no sense of justice through the law. Thus, instead of highlighting the need for social distancing, police will further segregate neighborhoods by targeting non-white people who are breaking rules, instead of punishing or enforcing rules to all citizens equally. For example, New York City Police Department officers were accused earlier this year of arresting people

in predominantly Black and Hispanic neighborhoods for violating social distancing rules, while not being as aggressive in white areas. Chief Jeffrey Maddery even admitted that ?there have been no formal training?of officers anywhere in the department. Thus, officers are free to police social distancing how they deem fit, and not by any executive,set standards from higher officials. So, it?s no surprise that of the 20 arrests recorded in Queens, 16 are Black or Hispanic. W hat makes this statistic worse is how Hispanic/ Black communities are already being disproportionately impacted by the pandemic. African-Americans and Latino persons are 4.7x and 4.6x more likely to be hospitalized and 2.6x more likely to die from COVID compared to white people.2 Therefore, law enforcement and public health officials should focus on identifying the long-standing systemic health and social inequities that put racial minority groups at risk from 4

COVID rather than policing them with no formal training. Thankfully, Governor Cuomo has stated that because ?Black and Brown communities are the first on the list of who died?that they shall be first on who receives the vaccine.3 Therefore, communities of color can get the medical care that they deserve instead of being left behind as always. Even if police departments manage to enforce this fine policy fairly, they do not have the resources to enforce public health requirements such as social distancing mandates. Dr. Lindsay W iley, professor of Public Health Law at American University states that ?when public health officials rely on policing, situations can become easily problematic and dangerous for all parties?because of the lack of training police have with public health regulations.4 Moreover, Sheriff Anthony W ickersham of Macomb County cited that staffing issues are the reason why masks could never be enforced by

police. Police departments simply do not have enough officers to patrol the streets fining citizens for not social distancing when it's not their original job responsibilities. Furthermore, police officers and health officials have raised the question on the practicalities of establishing rules for enforcing social distancing. For instance, is the host of the party charged a higher fine?Are all attendees fined?W hat if they were all tested beforehand?Is the fee lower if the gathering is outside?These are the type of questions that need to be answered before fines could ever be imagined. Instead of fining or arresting citizens due to their lack of social distancing, education should be more encouraged to people to cordially talk about why masks are required and needed to help people survive. Only then will the United States and other countries be able to confront coronavirus.

3 MAGAZINE NAME 5

Hydroxychloroquine. This is the drug that you?ve likely heard Trump promoting as a miracle cure for COVID-19, later proven ineffective and even unsafe in its treatment of the disease.1 You probably have not come across Ayurveda or Chinese Traditional Medicine as viable therapies to treat coronavirus. Living in a medical monoculture dominated by biomedicine, we know little about the diverse medical landscape present in other countries that use their traditional therapies alongside biomedicine. W hy do we ignore alternative therapies even if biomedicine does not always generate the best results?In March of 2020, the CDC warned against the use of face masks until they recanted this statement.2 This article seeks to present the diverse responses of medically pluralistic countries in light of the coronavirus pandemic and the mixed national and international responses these measures have generated. This article is for informative purposes and does not recommend any therapies. Please consult your doctor before embarking on any treatment or therapy for COVID-19. India is a prime example of a medically pluralistic country that recognizes Ayurveda, Unani, Sidda, yoga, naturopathy and homeopathy as legitimate systems of medicine within the country.3 Throughout 2 WEBSITE.COM/MAGAZINE

the pandemic, the Indian government has been promoting Ayurveda as an important therapy for COVID-19, recommending actions such as drinking warm water throughout the day, using turmeric and other spices in cooking, and drinking herbal teas made with basil, cinnamon, ginger, black pepper, and other ingredients. W hile many are doubtful about the efficacy of therapies, some studies suggest that Ayurveda might be useful in treating the psychological distress caused by COVID-19.4 Instead of targeting the virus directly, Ayurveda approaches the virus through psychoneuroimmunology, which draws connections between the nervous, endocrine, and immune systems. This field believes that mental distress will lead to compromised immune responses. Some case studies by Indian scientists show that Ayurveda can improve mental health, which will in turn positively influence immune function.5 Countries that employ traditional medicine may also have an inherently different understanding of the COVID-19 virus that informs their treatment methods. For example, the Chinese government has released a detailed recommendation for how to utilize traditional Chinese medicine (TCM) during different phases of the disease.6 One of the main

concepts in TCM is qi, which represents the air, water and food we take into our bodies as well as the more abstract energy and life force that flows through our body. This concept is evident in the guide, which guide outlines two early stages of observation and four clinical phases: 1. Fatigue and nausea in the stomach and intestine 2. Fatigue and fever, followed by the clinical phases 1) early phase: coldness and dampness constraining the lungs, 2) middle phase: the virus closing down the lungs, 3) serious phase: internal closure and external collapse, and 4) recovery period: qi in the lung and spleen depleted.7 For each phase of the disease, a different combination of Chinese traditional herbs are recommended. This is vastly different from the Western biomedical approach, which tends to treat a disease by its symptoms and does not have clearly outlined phases of the disease. Similarly to Ayurveda, the TCM approach emphasizes prevention and holistic therapies, often prescribing exercise and dietary practices. Some studies from within China have demonstrated that TCM may be effective in shortening the course of disease and promoting recovery through regulating the immune response.8 Despite trust in alternative therapies in their countries of origin, traditional medicines are 6

not recognized by global organizations and foreign countries for valid reasons. During the early months of the Coronavirus pandemic, the W orld Health Organization warned against using alternative medicines, stating that they ?are not effective against COVID-19 and can be harmful.?9 However, the W HO has since retracted this

warning due to the consideration medicine?may conjure an that people may use these medicines image of a fringe practice with to treat mild symptoms. The W HO, small local following, as of May 2020, also states that therealternative therapies are are currently no effective strongly backed by national medications (biomedical or governments and large alternative) that are proven to be corporations. Due to mixed effective at preventing or curing the incentives, governments and disease.10 companies have propagated W hile the phrase ?traditional

misinformation, often

branding alternative therapies as cures for COVID-19 without substantive evidence. In India, the Ministry of AYUSH, the governmental organization that manages all recognized systems of alternative medicine, has been criticized for releasing advertisements on newspapers marketed to people as effective cures for COVID-19. Additionally, Indian government officials have touted drinking cow urine as an effective cure, and some Indian-nationalist organizations have hosted reckless cow-urine drinking parties. 11 In the digital age, this type of misinformation has spread rapidly through platforms like W hatsApp.12 Similarly, the Chinese government has been criticized for not only promoting TCM as an effective cure but also silencing people that voice objections for the lack of evidence behind TCM as a

2 WEBSITE.COM/MAGAZINE

treatment. In late April, a doctor was demoted from his administrative positions when he denounced the efficacy of TCM in treating COVID-19.13 On an international level, scientists are skeptical of the clinical trials that were performed in China, believing that the studies were not rigorous enough. Many of the studies proving the efficacy of TCM used only small sample case studies performed on select individuals. W ith such a small sample size, it is hard to distinguish between whether TCM was responsible for a patient?s recovery or merely did not cause any additional harm.8 In other countries where world leaders promoted irresponsible cures (such as the U.S), there is space for fact-checking and discourse. However, the Chinese government has censored these voices that question the efficacy of TCM. China continues to send TCM to other countries as part of their international aid efforts,

with no widespread criticism from within the country. The Chinese and Indian governments promote these alternative therapies to make their traditional medicine profitable as well as spread a nationalistic message. These governments take pride in declaring that their ancient medicines are still effective in light of a modern pandemic. However, biomedical medical monocultures are not exempt from this pattern, with Trump touting an ineffective COVID drug. In any medical landscape, it is important to check your facts and consume medicine according to professional recommendations. W hile alternative medicine is not a staple in the United States, its potential should not be discredited by its entanglement of politics.

One of the most daunting questions America faces today is the question of health care in a post-pandemic world. W ill Americans return to the practice of relying heavily on medical facilities or utilize the well-documented benefits of preventive care?The impact of the novel pandemic on the United States healthcare system is immeasurable and begs the question for reform. As of October 15, 2020, the death toll has climbed to 215,000 and despite the positive test rate slowly declining, health care organizations and federal policy have much work to do, now and hereafter. Paradoxically, during the pandemic there has been a substantial decrease in preventative health care utilization. The Health Care Cost Institute (HCCI) has found that utilization of preventative health services has decreased from 184 million claims from 30 million patients in 2019 to 94 million claims from 20 million patients in 2020 across services such as childhood immunizations, pregnancy services, colonoscopies, and prostate-specific antigen (PSA) tests.1 W hile the case study was limited to certain health care services and a fraction of total hospitalizations, the data suggests that during the pandemic, people

have chosen to forego care they would have received under normal circumstances. Though this has its own health related implications, it is worth investigating whether preventive healthcare?s implementation would have positive effects on America's readiness for public health crises and the health care system. Disparitiesin theHealthcareSystem According to the New England Journal of Medicine, the United States needs a ?new approach to providing routine preventive care for adults?due to concerns about contagion, competing demands, and shortages of personal protective equipment for the ?routine annual exam.?2 The disparities in health that have been exacerbated by the pandemic will only worsen if evidence-based prevention is not enacted. Before the pandemic, many physicians believed annual exams and appointments did not have many benefits for the patient.2 Nonetheless, these exams, such as head-to-toe physical exams, establish trust between the physician and the patient and depending upon the results.3

These evidence-based preventive services have substantial disparities according to race, ethnicity and socioeconomic status. W hite people and those with higher household incomes use these exams more frequently than people of color or lower income individuals Healthcare providers have not bridged the disparities in access to preventative services The pandemic has revealed that this ?low-efficiency, low-efficacy mechanism?delivered to a broad population demands a new approach.4 Rather than preventive care being rooted in face-to-face annual exams, the New England Journal of Medicine suggests that the United States healthcare system shift to a focus on population health. Reforming theHealthcareSystem: A ThreeStep Plan Shifting the locus of preventive care has seemingly endless possibilities. However, by focusing the approach on reducing those disparities, it is clear that the methods must be rooted in efficiency, accessibility, and affordability. Physicians of the New England Journal of Medicine have many recommendations for community-based strategies 9

involving navigators to overcome health disparities in underserved populations.5 These plans are a good hypothetical representation of the demands set by physicians, epidemiologists and public health officials. The cost of this reform still has not been analyzed, but when compared with the ongoing costs of future health crises, it pales in comparison.2 The first step in this strategy is the development of a real-time clinical preventive care registry. This would asynchronously track the needs for preventive services of patients across all demographics. The Massachusetts Medical Society deployed a comprehensive registry which tracks all preventive services and their completion status for 250,000 primary care patients in eastern Massachusetts, including those who receive care from community health centers in low-income neighborhoods. The registry is integrated into their electronic health records (EHR) and has robust communication tools for patient outreach.1 W hile these registries exist today, there is a demand for an advancement which allows for better versatility across diverse health care settings and EHR vendors. The benefits of a universal registry counteract the weaknesses of the healthcare system today by providing proper analysis of utilization patterns, health conditions and demographics to help link patients to the best prevention approach and facilitate communication between physicians and patients.2

include point-of-care tests and other preventive services in a language-appropriate, culturally sensitive package. These tests would allow preventive care to begin from the patients?homes and is supported by the decrease in hospitalizations today. It is a fair argument that people would be more willing to take fecal immunochemical testing, glycated hemoglobin and lipid testing, and self sampling for cancer screenings from the comfort of their homes. QR code links to electronic questionnaires could be provided for depression screening, tobacco and alcohol use and risk assessment for breast cancer and cardiovascular disease.6 Immunizations and high-value preventive care not

feasible to be delivered at home would be provided at immunization clinics rather than annual exams. Building the infrastructure to provide shared-decision making materials for such packages is the challenge, as it would mean including universal self-scheduling instructions. The solution would be a system where after receiving the prevention kit, patients would schedule a virtual session with primary care providers to discuss all procedures, any findings, and plan physical interventions.7 The third step is to create programs which address the disparities in given populations. The New England Journal of Medicine

The second step is to develop the infrastructure for an annual ?prevention kit.?This kit would 10

presents its findings in which community-based patient navigators close the gaps in preventive care opportunities. Through the use of proactive outreach, congenial interviewing, and accompanying patients to critical procedures, these navigators can connect with patients and promote prevention.2 W hile these navigators cannot alleviate the cause for disparities in health, including poverty, educational barriers, poor nutrition and racism, they help make preventive services more equitable. What Will it Take? The implementation of this plan hinges on payment reform and acceptance from health care providers and recipients. For population-based prevention to succeed, the healthcare system must show commitment to addressing the disparities which reduce access to preventive services in the present. This means the patient should not incur a substantial fee for registry, packages, nor navigator interaction.6 Another

problem is that health care centers in certain communities already disproportionately provide care to underprivileged populations and have limited infrastructure and resources. The pandemic?s drop in visit volume has put these providers in financial crisis. Payment reform would mean allowing these centers to shift from visit-based payments to community-based prevention programs. This could incentivize payments to these centers to invest in population health technology.3 Acceptance from physicians and patients is an additional challenge but one that is easier to address. Due to the pandemic, patients are already demanding a more comprehensive, accessible, equitable, and involved health care system.4 Virtual visits and convenient, personalized testing strategies have the potential to counterbalance the delay of life-saving preventive screening for millions of patients caused by the pandemic.

Healthcare, an essential aspect of every country and society, is one area in the United States that hosts some of the greatest racial discrimination. According to Alondra Nelson, ?health is politics by other means.?1 Since the founding of the country, unequal treatment in all aspects of American life has oppressed and subjected Black people. The healthcare system, in place to benefit people, has time and time again failed Black Americans. In a research study, Paula T. Ross, Monica L. Lypson, and Arno K. Kumagai asked twelve African American test subjects --varying in gender, age, ailment, employment status, and insurance-- to describe 2 WEBSITE.COM/MAGAZINE

their experiences at medical institutions where they received treatment. W ith so many variables to consider with this study, the only constant was the way the subjects described their treatment. A majority of the participants reported that their examiners ?didn?t believe there was anything wrong with [them]?or made facial expressions that gave the impression that ?they did not want to be bothered, that they were doing it because they had to.?2 Revelations such as these are not rare nor are they new. The conventions perpetrated by medical practices during the 1700s and beyond never really left American society. W ith COVID-19 becoming

more and more deadly, the adverse effects it is having on the Black community are becoming apparent, many of which stem from healthcare practices and stigmas from the mid-1900s. The Tuskegee Syphilis Study, perhaps the most controversial medical study in recent history, was conducted by the US Public Health Services (PHS) scientists from 1932-1972. The PHS, which still exists today, was a group of qualified health professionals whose goal was to ?protect, promote, and advance the health and safety of the nation.?3 The study is infamous for its treatment of black men with 12

syphilis. Most of the participants in the study were in the final stage in the disease, which causes the greatest damage. As described by Harriet A. W ashington, ?scientists [who participated in the study] had long claimed that the venereal disease manifested differently in blacks than in whites, and the PHS (public health service) scientists decided to document this by finding a pool of infected black men, withholding treatment from them, and then charting the progression of symptoms and disorders.?4 By the time the study came to its forced end due to public outrage in 1972, ?twenty-eight participants had perished from syphilis, one hundred more had passed away from related complications, at least forty spouses had been diagnosed with it and the disease had been passed to nineteen children at birth.?5 These morbid results show the complete disregard for Black lives during and after the experiment, with effects even being passed onto future generations.

social class were considered symptoms. Pilot study data eugenically superior; the poor, the done by biotech research firm uneducated, criminals, recent Rubix Life Sciences showed immigrants, blacks, and the that Black people who exhibit feebleminded were eugenic COVID-19 symptoms were six misfits.?6 Because scientists times less likely to receive constantly sought ways to make treatment or testing compared black people look inferior, they to white patients who showed often made them targets of the symptoms.9 This study eugenics movement, resulting in supports anecdotal accounts African Americans being from Black patients who overrepresented in the ranks of reported that they were refused those sterilized. For example, when tests and treatment, anecdotes the sterilization of 8000 ?mentally that are corroborated by a retarded?persons occurred in North history of doctors dismissing Carolina, 5000 were black. By 1983, the health complaints of Black 43 percent of the women sterilized people, especially women. in federally funded programs were James Marion Sims was a black, despite the black people major player in the creation of constituted only 12 percent of the the dismissal of Black women entire population.7 A number of in the healthcare system. His these sterilizations occurred in the incorrect hypothesis that Black form of Mississippi women do not feel pain has Appendectomies: unnecessary, permeated society for non-consensual hysterectomies centuries. The ?father of performed on black women, gynecology?made a name for especially poor women, to prevent himself by exploiting the them from reproducing and also to humanity of Black women and give young doctors an opportunity doctors today continue his to practice the procedure. legacy by doing the same thing.

Today, Black people make Additionally, data have shown up about 13%of the US population that Black communities are less Between the 1930s and but are about 24%of the COVID-19 likely to have the testing and 1970s, the eugenics movement deaths as of June 2020. They are 2.4 medical supplies that they need.10 Since many public was getting more and more times more likely to die from popular. The goal of the coronavirus, and while some of this services are funded by taxes, institutions such as schools and movement was to improve the disparity can be attributed to the genetic composition of the role Black people play as essential hospitals are less funded compared to those in white country by eliminating genes that workers, another aspect is the were undesirable and it has often healthcare system?s distrust of Black communities. There have been lower testing rates reported in been related to the creation of people. As previously stated, the Black neighborhoods compared Planned Parenthood. In order to main consensus of the Ross et al. eliminate such genes and traits, study was that providers refused to to white ones across the individuals carrying them, or believe the health qualms of Black country, a major contributor in deemed undesirable by physicians people. Studies have shown that the the spread of COVID-19 and alarmingly high death rates or society, were made sterile. same applies today, as doctors among the African-American ?Highly educated persons of good continue to discredit their

community.

white adults.11 These figures should be concerning, especially Another point to consider is Black people?s justified considering the fact that the country has not done much to gain back the distrust of the medical trust of its Black citizens. W ith these community. As previously mentioned, the Tuskegee Syphilis factors in mind, it is evident that the US healthcare system?s history has experiment and eugenics continued to affect the workings of movement took advantage of the current system, continuing to misinformed Black citizens, disregard Black people and ignore putting them at risk and causing them, even during a time when all pain to their families. The people should be fought for equally. repercussions of these events have caused Black people to lose faith in the healthcare system. Only 35%of Black people have great confidence in medical scientists to act in the public interest, compared with 43%of

As countries around the world rush to develop COVID-19 vaccines, it is natural to wonder whether vaccine development is being over-accelerated. W ill this result in safety and efficacy concerns?Or is it more necessary to address the immediacy of the pandemic even if all potential safety concerns are not addressed?On one hand, there is an urgent necessity for a COVID-19 vaccine as COVID-19 cases are rising, negatively impacting ?income due to premature deaths, workplace absenteeism, and reduction in productivity and [creating] a negative supply shock, with manufacturing productive activity slowing down due to global supply chain disruptions.?6 This massive economic disruption suggests that it is necessary to deploy a vaccine quickly not only to ensure that citizens are not dying or suffering from the disease itself but also to ensure that more people do not suffer from the economic 2 WEBSITE.COM/MAGAZINE

consequences of the lockdown. Thus, delayed approval of a vaccine could cost many more lives, result in the discontent of citizens with their government, and act as a massive socioeconomic burden for citizens around the world. On the other hand, there are many concerns that vaccine development is being over-accelerated. W ith Russia?s emergency use authorization (EUA) of Sputnik V vaccine and America?s efforts to rush vaccine development, we have to wonder whether this ?race?for a cure is risking safety. Lessonsfrom Sputnik V: Russia?s Vaccine One way to assess the effects of rushing vaccines to approval may be to look at the vaccine candidate in Russia, a country that has already delivered a COVID-19 vaccine through emergency use authorization without completing Phase III trials. This strategy may likely compromise safety and public

confidence at the expense of acceleration, especially since Russian citizens are not being well-informed about the risks of taking the Sputnik V. Additionally, there seem to be issues that may limit the efficiency of the Russian vaccine. In order to deliver a vaccine, a viral vector must be used so that DNA can be delivered to cells. Sputnik V uses an Ad5 vector, which about 60%of the population may have preexisting immunity against, meaning that the vaccine will likely not be effective for a large proportion of the population.4 Furthermore, Dr. Zhou Xing who previously worked with Ad5 vectors for tuberculosis treatment expressed that he ?worries that high doses of the Ad5 vector could induce fever?which would likely yield strength to the anti-vaccination movement.?4 Advancements in vaccine research may force Russia to later roll-out an entirely different vaccine instead of evaluating their current vaccine candidate through the EUA. A more promising candidate will likely emerge since there is a 15

multitude of research on alternative vectors to increase safety and efficiency.4 W hether or not this strategy works in Russia, it is likely that it will not be as effective in other countries like the United States. An important consideration is that the media scrutiny and increased civil freedom in the U.S. may result in lower vaccination rates due to skepticism over whether or not vaccines are effective in practice. In fact, 49%of respondents to a Pew Research Center Survey in September 2020 said they would ?definitely or probably not get vaccinated?if a vaccine was available then.8 The U.S. government should not follow this example without a more comprehensive evaluation of safety and efficacy data in the long term through completion of Phase III trials in order to gain public confidence. In addition, past acceleration of COVID-19 treatments such as convalescent

plasma and hydroxychloroquine have disappointed the public, harming public perception of government-accelerated approvals.1

with a normal prevalence of one in 236,000 patients.2 The NIH has demonstrated concern that these cases could be linked to vaccine safety issues.

Operation Warp Speed: Can we balancesafety, efficacy, public perception, and speed?

Vaccine timelines largely depend on the expectations set for development. Specifically, the target endpoint for the trial and demographics of samples in clinical trials will play a large role in the safety and effectiveness of the vaccine.1 Ruth Karron, MD, serving on committees for the CDC, W HO, and FDA, stated that ?If we turned a severe disease not into ?no disease?but into mild disease, that would be a real victory.?5 However, it is debatable whether this is the primary focus of trials. Most trials have a primary efficacy endpoint of about 50%and AstraZeneca and Pfizer define even a slight cough and positive result as a case.3 Considering that 80%of COVID cases are mild, acceleration may shift focus towards the reduction of mild COVID cases

Although acceleration is necessary, the U.S. government?s effort to deploy 300 million doses of vaccine by January 2021, known as Operation W arp Speed, is causing many to question whether the government is intervening too much in the operations of pharmaceutical companies and clinical trials to be set with lower expectations to maximize their chance of success.7 Recently, there has been a lot of public uproar over two cases of severe neurological illness linked to AstraZeneca?s Phase III vaccine candidate.4 One of the 8,000 volunteers developed transverse myelitis, a neurological disease characterized by inflammation of the spinal cord,

specifically linked to the AstraZeneca vaccine to maintain the confidentiality of trials, and it is too early to make conclusions about side effects, it is worth taking extra time to fix public perception to ensure higher vaccination rates. In addition, Phase III clinical trials should place greater emphasis on determining whether their vaccines reduce mortality rates and severe cases. The government must aim to build public confidence at least in the U.S., a country with growing anti-vaccination movements and intensive media scrutiny. This is crucial because even the most effective vaccine is useless if people refuse to take it. In order to be convinced that a vaccine is safe, the public must not feel that the process has been over-accelerated in neglect of safety. Next Steps W ith efforts such as Operation W arp Speed to diversify vaccine candidate portfolios and mitigate risks, vaccine development will already be accelerated. However, it may be necessary to slow down

development to build public confidence and ensure efficacy. Instead of using a strategy to reduce the incidence of mild cases, companies should focus efforts on maximizing efficacy to gain public trust. If an EUA is enacted, it should only occur if vaccine candidates demonstrate reduction of severe cases and mortality with limited adverse events rather than just reduction in mild cases. Deploying an effective vaccine the first time could increase public compliance measured by vaccination rates. In current Phase III trials, a greater focus on efficacy can be accomplished using a composite index placing weight on the reduction of mortality and diminished incidence of severe COVID-19 as opposed to an excessive focus on mild cases, merely because they are observed in a larger percentage of patients. This will ensure a higher efficacy, which will mitigate anti-vaccination movement uproar, cultivate public trust in government public health initiatives, and lead to greater compliance.

For the very first time in history, in the year 2020, the Nobel Prize in Chemistry has been awarded to two female scientists, Emmanuelle Charpentier and Jennifer Doudna, for pioneering the groundbreaking gene-editing technique that revolutionized genetic engineering beyond science?s wildest imaginations: CRISPR-Cas9.

bacteria and archaea. It functions as a microbial immune system of sorts, used by prokaryotes to prevent infection by viruses. In its essence, the CRISPR system enables prokaryotes to recognize precise genetic sequences that match a phage (or other invaders), and target these sequences for destruction by specialized enzymes.3

Given that Dr. Charpentier and Dr. Doudna are just the sixth and seventh women to receive the prestigious Nobel Prize in Chemistry, and this is the first Nobel Prize to be awarded to two women only, the significance of Charpentier and Doudna?s achievement cannot be understated. Doudna, proud to be a part of such a breakthrough for women in science, says, ?it?s great for especially younger women to...see that women?s work can be recognized, as much as men?s.?1

The CRISPR tools developed by Charpentier and Doudna consist of two primary components: a guide RNA and an enzyme that cuts DNA (typically Cas9). In order to use these genetic scissors, scientists must first design the guide RNA such that it mirrors the DNA of the target gene. The RNA then partners with Cas9 and, as its name suggests, guides Cas to the target gene. At the point where the RNA of the guide aligns with the DNA of the target gene, the enzyme Cas9 makes a cut.4

These two researchers originally developed CRISPR-Cas9 in 2012 and rose to fame soon after. CRISPR, commonly known as ?genetic scissors,? because it enables precise ?cuts?to the genome, was the first tool that made it possible to change the entire code of life over the course of a few weeks.2

At first glance, CRISPR may not seem like a game-changer of any kind. Over the past few decades, several gene-editing tools have been developed. So what makes CRISPR so special?

?The ability to cut DNA where you want has revolutionized the life sciences,?said Pernilla Stafshede, an influential chemist and member of the Nobel chemistry committee, at the awarding of the 2020 Nobel Prize. And indeed it has. W hen Charpentier and Doudna began investigating the immune system of the streptococcus bacterium, they originally envisioned developing a new form of antibiotic. But instead, they discovered a molecular tool that has immeasurably reshaped the life sciences just eight years following its revelation. CRISPR, short for Clustered Regularly Interspaced Short Palindromic Repeats, is a family of DNA sequences found in thethegtheenomes of prokaryotes -

First and foremost, CRISPR is one hundred percent customizable, with the ability to cut practically any segment of DNA within the entirety of the human genome - in all its 3 billion letter glory. As an added bonus, CRISPR is both faster and cheaper than previous gene-editing tools. W ith the older methods, it would take about two years to create a genetically engineered model of a mouse. CRISPR has cut that time frame down to a mere two months.5 CRISPR?s accessibility is yet another reason scientists consider it to be unique from its predecessors. Before, only very high-end laboratories had the capabilities to build the tools for precise gene editing. Now, even students in high school can make edits to intricate genomes. As one could imagine, a technology that allows such precise edits to the genome has countless applications, 18

and Charpentier and Doudna?s epiphany has already swept through laboratories worldwide. Researchers have recognized its immense potential to eliminate diseases, contribute to innovative cancer therapies, build hardier plants, eradicate pathogens, and more. In plant breeding, researchers have begun implementing CRISPR to give plants specific desirable characteristics, such as the ability to withstand droughts and pests, as well as to adapt to the changing climates of their environments. CRISPR?s impacts in fields like horticulture have been particularly prominent. One seemingly unremarkable issue that has been resolved by CRISPR is that of apples turning brown post-slicing. CRISPR?s advantage in apple breeding lies in its ability to replace or delete specific parts of the plant genome without introducing foreign DNA to plant cells. Deleting or ?turning off?a gene, such as the one responsible for the brown pigmentation in cut apples, not only provides immense promise to apple breeders, but it is also favored by consumers, who often prefer to buy non-GMO products.6 In medicine, this gene editing technology is contributing to the first studies attempting to cure inherited diseases. Trials are currently underway to make these long-held dreams come true. Researchers are investigating whether they can use CRISPR to treat blood diseases such as sickle cell anemia and beta thalassemia, as well as inherited eye disorders.7 CRISPR even has the capacity to repair genes in larger organs, such as the brain and muscles. Perhaps the most promising application of CRISPR within healthcare is in cancer research. The first trial in the United States to test a CRISPR-made cancer therapy was launched in 2019 at the University of Pennsylvania. The study, funded in part by the National Cancer Institute, experimented with a type of immunotherapy in which patients?own immune cells are genetically modified to better detect and kill their cancer cells.

Although this trial is exciting and shows that prospective CRISPR-edited cell therapy is possible in cancer treatment, its long-term effects have yet to be observed, as Dr. Stadtmauer explained. The NYCE cells are ?safe for as long as we?ve been watching [the study participants]. Our plan is to keep monitoring them for years, if not decades,?he said.10 It has become clear that CRISPR holds enormous power for groundbreaking medical treatments and a widespread impact in healthcare. But with great power comes great responsibility. And the untapped potential of genetic scissors underscores just why regulation is essential. For all their benefits, genetic scissors have been misused in several instances. For example, CRISPR was used in one of the most controversial biomedical experiments of the past decade. A Chinese scientist edited the genomes of human embryos against possible HIV contraction, allowing this mutation to be passed on to future generations.11 Though this scientist was widely condemned and eventually sentenced to jail, his work sparked a discussion about the ethics surrounding germline editing, which has the potential to forever alter the species of mankind. For many years, there have been laws and regulations that control the application of genetic engineering, including prohibitions on modifying the human genome in a way that allows the changes to be inherited. To this day, the ethics of gene editing remains a hotly debated topic in the scientific community, and the likelihood of it being resolved anytime soon is slim. But one thing is certain: these genetic scissors affect us all. W hile we will continue to face ethical issues as we harness the power of this incredible tool, it may well contribute to solving many of the challenges now facing humanity.

The trial involved making edits to T-cells - immune cells that fight cancer cells - by removing the NY-ESO-1 receptor gene and using these modified cells in T-cell therapy. The therapy initially worked for two patients, one with sarcoma and one with multiple myeloma, although their tumors resumed growing later.8 Dr. Edward Stadtmauer, the leader of this trial and M.D. at the Perelman School of Medicine, says that ?solid tumors have been a much more difficult nut to crack with cellular therapy,?but he remains optimistic that ?perhaps [CRISPR] techniques will enhance our ability to treat solid tumors with cell therapies.?9 19

In healthcare, choice is extremely important to ensure patient well-being and autonomy. It is imperative that patients can choose their doctor and their treatment method. Patients should even have the choice to refuse treatment. This is meant to ensure the best experience and outcome for consumers of our healthcare system while also treating them as autonomous individuals. However, the benefits of choice are often improperly extended to include a choice of healthcare plans themselves. The United States has become overly reliant on the ideal of choice to the point where it is extended into the realm of healthcare plans where it has no business being. The W eaponization of Choice Choice as a healthcare policy goal has become an oft-used political weapon to appeal to the American voter?s belief in the ideal of individual autonomy. It is a defining feature of both Republican opposition to the Affordable Care Act and the opposition of some Democrats to Medicare for All. Republican plans, for example, make clear that their goal is to expand choice for citizens in deciding all aspects of their healthcare. They proclaim this in the GOP Platform, stating that ?you

should have the freedom and the flexibility to choose the care that's best for you?and ?[a]t every step, you should be in the driver's seat. This is a better way.?1 Meanwhile, many Democratic Party presidential candidates wielded choice as a healthcare policy goal in the 2020 primary debates. They highlighted it as a reason to oppose the Medicare for All Plan espoused by Senator Bernie Sanders. Pete Buttigieg and Vice President Biden both spun a public option as a new choice for Americans. Both Republicans and many Democrats take for granted that choice necessarily leads to people selecting and receiving the best healthcare plan for themselves.2 Further, it is a blatant political tool used to increase a politician?s chances of getting elected through a bad faith appeal to the ideal of American individualism.

complexity of the plans, complicated healthcare concepts, opacity of terminology, and the financial implications of their healthcare decisions. For example, only 14 percent of people surveyed correctly answered four multiple-choice questions about the basic concepts of insurance: deductibles, copays, coinsurance, and maximum out-of-pocket costs.3 According to a study conducted by the economists Jason Abaluck of Yale and Jonathan Gruber of MIT, this lack of education translates to a measurable inability to maximize savings as only 12.2 percent of the elderly could choose the lowest cost plan for themselves.4 W hile limiting options would appear to be an act of overt paternalism, it is clear that the average American is not equipped to make the necessary choices in ?the driver?s seat.?To force them into the driver?s seat is not a true expression of freedom but rather a form of abuse.

The Challenges of Choice The reality is that many, if not most, people are incapable of determining the best healthcare plan for themselves. Many people simply are not knowledgeable enough to navigate the assortment of plans in order to choose the optimal plan for them and their families. This is due to the difficulty people have in understanding the

The Restriction of Choice W hile consumers have maximum choice among healthcare insurance plans, this restricts choice in the actual delivery of healthcare. The current state of competition and choice in healthcare insurance limits one?s choice of doctors, medical treatment, and drugs in the 20

name of cost-cutting and profit maximization. Insurance companies limit one's choice of doctor because they will only cover doctors with whom they have existing contracts. As a result, the most compatible doctor for you may not be available at a manageable cost. If one were to choose an out-of-network doctor, they would usually have to bear a greater burden of the cost of treatment.5 Additionally, certain medical treatments and drugs can be excluded from one's insurance plan because the healthcare company deems them too expensive or unnecessary. These medicines are accordingly placed on a formulary exclusion list, which has grown significantly since 2014.6 However, simply because the drug is considered ?unnecessary?by the healthcare insurance company, it does not mean that it is not necessary for the patient. In fact, many of the excluded treatments are biologics, medicine made from

animal proteins.7 W hile these are more expensive to produce, they are also necessary to treat certain cancers, psoriasis, Crohn's disease, and multiple sclerosis.8 Due to these exclusionary lists, which are driven by profit maximization, people are forced to pay exorbitant prices for necessary drugs. Insurance companies can have a direct say and complicate treatment in more hidden ways. For example, they may require prior authorization for certain treatments and drugs, which is a time-consuming process for a physician. It also has a demonstrably negative effect on quality of care.9 Additionally, during the course of treatment, they can force patients to switch to less effective treatments and medicines by suddenly eliminating coverage or increasing costs. This has a particularly negative impact on people with diabetes and other chronic diseases requiring consistent treatment.10

Such is the state of the current competitive landscape of healthcare insurance that more options actually limit choice of care. This is meant to help control the cost of healthcare but also leads to profit maximization for insurance companies at the expense of the patient. Is it really worth it to opt for more choice in healthcare insurance if that does not translate into choice in what truly matters: your doctor, your medical treatment plan, and your prescriptions? Concl usion W hen analyzing the true ability of Americans to make choices about their insurance plan, one can clearly see that choice is much more complicated than giving Americans the most amount of options possible. Having a plethora of choices does not lead to better and cost-effective healthcare. Americans usually cannot pick the most cost effective choice for themselves due to lack of education and the overall complexity of healthcare insurance. Further, the more choices provided among insurance plans, the less choices people are given in treatments, medicine, and doctors. Nevertheless, politicians from both major parties endlessly insist that patients need more choice in healthcare plans as a political ploy to appeal to the inordinate value Americans placed on individualism. As a result, the health of Americans suffer.

Throughout his term, President Trump has made numerous attempts to overturn the Affordable Care Act, which was passed by the Obama administration in 2010 with the intention of increasing nationwide access to health care. The death of liberal justice Ruth Bader Ginsburg, as well as the instatement of new justice Amy Coney Barrett, sparked incredible controversy preceding the presidential election. Issues such as the future of the Affordable Care Act and abortion rights were at the center of these conversations. At its conception, about 40%of Americans expressed support for the Affordable Care Act.1 Although it lost popularity throughout Obama?s term, it has recently gained ground in the eyes of the public, with about 55% of Americans in favor of the legislation in October 2020. 2 One of the most important, and most controversial, aspects of the Affordable Care Act is the individual mandate, which requires individuals to purchase health insurance that provides a certain level of basic coverage. If they decide not to do so, they must make a payment to the IRS, which is collected in the same way as taxes. The Act protects the American consumer in many new ways. It prevents insurers from increasing prices or denying coverage to individuals (including children) who have pre-existing conditions, as long as those conditions are revealed upfront.3 The Affordable Care Act also asks all employers and schools to provide access to contraception unless they have direct religious objections. Lastly, it is responsible for bolstering the Medicaid program, which allows Americans who make

133%of the poverty level or less to receive free coverage; this expansion has allowed more extensive access to medication and mental health services (although states could choose whether to opt into the program). 4 In 2012, the Affordable Care Act was brought to the Supreme Court through a case titled National Federation of Independent Business(NFIB) v. Sebelius. The justices came to a complex conclusion regarding several provisions of the legislation. One important question was that of the constitutionality of the individual mandate, which the defendants of the Act argued could be upheld under the Commerce Clause (if a law Congress passes has a ?substantial effect?on interstate commerce, it can be considered constitutional).5 The majority opinion strikes down this reasoning and instead, views the penalty for not purchasing insurance as a tax. They establish the constitutionality of the mandate instead under the Taxing and Spending Clause.6 In her concurrence, Justice Ginsburg argues that the mandate can be upheld under the Commerce Clause. She explains that as the healthcare market is expansive, almost every American will visit a doctor at some point. The healthcare market is burdened by the large number of people without health insurance; even if patients cannot pay, hospitals must still provide care. As a result, to cover these costs, insurance providers raise their prices. The states cannot take on health insurance policy themselves, according to Ginsburg. It is a national issue and necessary for Congress to 22

intervene.7 Following NFIBv Sebelius, the Affordable Care Act, including the individual mandate, was modified. Trump was able to greatly reduce the Act?s outreach program and in 2019, the monetary penalty for refusing to buy insurance was removed. This change undermined the reasoning of the majority in the NFIB case, and as a result, the constitutionality of the Act has been brought to the Court again.8 If the entire system set in place is overturned, according to the Urban Institute, enrollment in the Medicaid program ?would drop by more than 15 million, including roughly three million children who got Medicaid or the Children?s Health Insurance Program when their parents signed up for coverage.?9 Spending allocated to the opioid epidemic would greatly decrease. Furthermore, the 171 million Americans who are covered by their employers or who participate in other insurance plans will have to pay much more out-of-pocket for expensive, scientifically advanced medical treatment; before the Act, many individuals

faced caps on the amount of coverage an insurance company would provide.10 W ith Ruth Bader Ginsburg?s recent death, Trump quickly appointed a new justice, Amy Coney Barrett, leaving the Court with a 6-3 conservative majority (far to the right). W hen questioned about the Affordable Care Act case in October 2020, however, Barrett referred to the severability doctrine, which argues that an unconstitutional aspect of a law can be struck down without destroying the rest of the legislation. In other words, the law can persist if the individual mandate itself is cut out. The Trump administration has disagreed, however, stating that it ?is not severable from the rest of the Act.?11 Barrett?s true stance remains unclear, and so does the future of the Affordable Care Act; she criticizes Roberts?legal argument in the NFIB majority but also asserts ?it?s clearly a good result that...millions of Americans won?t lose their tax subsidies.?12

There is a huge market for health data, but the current market in the U.S. is inefficient. A properly functioning market incorporates all players in the supply chain, but with health data, the most important stakeholders, the patients, are not sufficiently active players in the market, signaling a market failure. In many cases, this is because health systems share data without patient consent, or they have patients sign blanket consent forms that most patients don?t read, let alone understand. Thus, current laws do not adequately protect or empower patients to be active players in the health data market. Although in recent years there have been monumental shifts in security standards, given the amount of health data that is collected, and the number of companies with access to health data, regulation of health data relies on three outdated policies. The Health Portability and Accountability Act (HIPAA) was introduced in 1996. It ensures that medical data isn?t accessed by unauthorized parties or stolen, and establishes the right for all people to have access to their individual health records.8 The 2009 Health Information Technology for Economic and Clinical Health Act (HITECH) encouraged health care providers to transition from paper records to Electronic Health Records (EHRs).7 The Final Omnibus Rule of 2013 advanced standards in cyber security related to health data.9 The lack of additional policy since 2013 has left many gaps in legislation that health care systems and tech firms can exploit to profit from health data. I argue that we need amendments to HIPAA to account for new trends and practices by health systems and technology firms in order to protect patients and allow them to participate in the health data market. Objective Evidence

Since the emergence of big tech and data analytics, there have been debates on the ethics of using the data of consumers for profit. In 2018, Google began a secret partnership with Ascension, one of the nation?s largest health systems. This partnership, called ?Project Nightingale,?gave Google access to the medical records of over fifty million people in twenty-one states, without informing patients.1 This partnership and transfer of data is presumably legal under HIPAA (although it has not been challenged in court), as HIPAA allows hospitals to share data with business partners without telling patients, as long as the information is only used in order to support the covered entity in carrying out its health care functions.5 Although Google and Ascension claim the core goal of the partnership is to improve the patient experience, sharing patient data without consent violates patients? basic expectation of privacy and it can result in secondary harm to their patients. Ovia, a pregnancy tracking app used by millions of women, provides one example of how companies collect medical information from employees with the intent to cut medical costs and help usher women back to work.3 The app collects heaps of intimate data, including sexual activity, bodily functions, medications, and personal ratings of sex drive and mood. Ovia says that it removes any identifying data and supplies the aggregated data to the users?employers to view and analyze. This aggregated information, which includes numbers of miscarriages, percentages of cesarean section births, and the frequency of postpartum depression, is seen as extremely valuable in helping companies cut insurance costs. Activision Blizzard, a video game company with 9,200 employees, reports that the Ovia app has saved the company approximately 24

$1,200 per employee in annual medical costs.3 But these savings may have come at the risk of compromising employee privacy. One problem with the sharing of aggregated, anonymized medical data is that it can be relatively easy to ?re-identify?individuals by cross referencing large data sets. Big technology companies have massive data sets they can use to cross reference health data. W hile anonymized medical data might not have names, addresses, or birthdates, it often has identifying information such as age, zip code, and other demographics that can be used to link health records to

individuals. Regulators recognize these issues and have emphasized the need for new interventions that give patients greater power. In 2016, the Department of Health and Human Services issued a report to Congress entitled ?Examining Oversight of the Privacy & Security of Health Data Collected by Entities Not Regulated by HIPAA.?The report states that many of the technologies that exist today, such as wearable fitness trackers, did not exist when Congress enacted HIPAA in 1996.10 It goes on to say that consumers don?t generally know how their data is being used, and that

there are clear gaps between HIPAA regulated entities and those not regulated by HIPAA. The report ends with a recommendation that Congress addresses ?? those gaps in a way that protects consumers while leveling the playing field for innovators inside and outside of HIPAA?.10 New legislation is needed to account for changes in the health care and technology industries. Policy Solutions The most obvious approach to stabilizing the market would be to present new legislation that fills the current gaps in HIPAA. One possibility would be to mimic what the European Union (EU) has implemented to protect the privacy and security of their citizens?data. In 2016, the EU adopted the General Data Protection Regulation (GDPR), which requires all businesses to protect the personal data and privacy of all EU citizens for all transactions that occur within the EU.2 In many respects, this regulation is much more stringent than HIPAA. For one, it covers all personal data, not just health data. But it also puts into place time limits on how long data can be held, how to handle data if your company is acquired (data can?t be transferred under most circumstances), and the right to be forgotten. The latter provides that any European citizen can contact a company and ask them to delete all their personal data, and the company is required to comply. The U.S. could follow in the EU?s footsteps and adopt all, or part, of the GDPR and apply its protections to healthcare data.

strips out identifiers from a data set, they are allowed to sell that data to anyone. The marketing, pharma, and insurance companies who buy this de-identified data do not have to follow HIPAA laws on these data sets. But researchers have demonstrated that it can be very simple for these companies to re-identify the data if they desire to.6 Other potential regulatory solutions would be to limit downstream use (i.e. no selling data to third parties), establish restrictions around reidentification, or narrow specifications surrounding what health data can be used for once it is obtained. Conclusion Since HIPAA?s creation there have been monumental technological shifts in the way that health information is used, stored, and shared. However, the market has not self-corrected to give patients control over their data and power in the market, and HIPAA no longer protects the privacy and security of patients and their health information. Health systems and technology firms are taking advantage of regulatory gaps and loopholes and in doing so are compromising the privacy of patients for their personal profit. We need more thoughtful regulation and private policies in order to restore the balance of power and create a more functional marketplace for health data where patients have greater control over their personal data and companies are economically rewarded for responsible stewardship of health information.

Another step in the right direction would be to close the de-identification loophole. Currently, if a company

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