Center Assistant Professor Dr. Laura Cabrera and Dr. Robyn Bluhm, Associate Professor in the Department of Philosophy and Lyman Briggs College, are co-authors of a commentary published in the latest issue of AJOB Neuroscience.
In “Fostering Neuroethics Integration: Disciplines, Methods, and Frameworks,” Drs. Cabrera and Bluhm comment on two papers that are part of the journal’s special issue on the BRAIN 2.0 Neuroethics roadmap.
Drs. Cabrera and Bluhm are co-investigators on an ongoing NIH BRAIN Initiative project,
“Is the Treatment Perceived to be Worse than the Disease?: Ethical Concerns and Attitudes towards Psychiatric Electroceutical Interventions.”
The full text is available online via Taylor & Francis Online (MSU Library or other institutional access may be required to view this article).
“Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.” -Audre Lorde
Much has been written about finding meaning in illness. Others have written about finding meaning in caregiving. But taking care of someone else’s s!#t has its own intrinsic meaning, and for much of the time, it’s not all good.
For some, doing this work may allow them redemption—to repent for past wrongs, or it might allow them to display their humanity in ways they have not done before. Some may experience joy with self-sacrifice. I wish you well. Amid the crucible, women are performing all sorts of gendered work, and especially gendered care work. What do I mean by that? Women perform the majority of caregiving work to family and friends, i.e. women are the ones taking care of someone else’s s!#t. This work is unpaid, labor intensive, and career limiting if not career destroying.
Image description: An illustration of a faceless woman with six arms, each arm holding objects that represent a particular set of tasks: correspondence, computer work, food, entertainment, cleaning, and childcare. Image source: Multitasking Vectors by Vecteezy.
Care work offers few rewards, but it is necessary, and it is often silently expected of women. Unpaid labor that diminishes or denies opportunity for growth and sustenance is unfair, unjust, unsustainable, and wrong. Caregiver resilience may be a thing but is most likely a statement of privilege. Women do the work to the detriment of self-care, careers, outside friendships and interests, and other family relationships. Un- and under-paid gendered care work is a real and present danger to the overall wellbeing of women. As a society, we cannot keep telling women that this kind of gender discrimination in care work, especially for their family, is okay. It is not okay. Women must acknowledge all the ugliness that comes with taking care of someone else’s s!#t—the resentment, anger, frustration, disappointment, loss, fear, disgust, exhaustion, defeat.
So, who will do this work?
Dare I say, salaried home health assistants with all the benefits afforded fully employed persons—health insurance, retirement, educational assistance, PTO, etc. BUT then, who will do that work? Women, and more specifically women of color and immigrants. Whether women do it as unpaid family labor or as salaried health aides, women do care work. It may be reasonable to assume that the salaried worker may be better able to handle the emotional demands of the work. The unpaid family care worker is burdened with history, regrets, slights, insults, lies, disappointments, unforgiven and unforgivable acts, whereas the salaried care worker is not burdened with that baggage, and thus, may be a better and perhaps even a more caring caregiver. Absent the burden and weight of historical relationship bonds, women—as daughters, sisters, spouses, and mothers—may be able to find meaning in just being themselves.
Although the inequity of gendered work has always been there, the COVID-19 pandemic has shed revealing light on this inequity, just as it has on racism. Women are performing job duties remotely from home, becoming teachers, chefs, activity directors, housekeeping staff, laundry workers, and of course the calm in the storm, etc. Working the second shift does not go far enough in describing that reality—women hold on average about 100 jobs that are unpaid! These jobs historically have been the purview of women, but gendered work in the home is the cause of much friction in marriages. Moreover, women are balancing care of children with the care of parents, at times both their own and those of their spouse. Those women fortunate enough to retain their jobs and work remotely were immediately immersed in work that was unfamiliar and, in many cases, unwanted—24/7 care and attention to children, spouses, and others. For those caring for the ill, the disabled (mentally, physically, or cognitively), or the aged, or any individual with any range of functional and psychological limitation, the pandemic significantly increased the workload. Many people do this care work because they want to, out of whatever love and obligation they have for the care receiver. For others, there is no one else to do the work and it may feel, and indeed be, life limiting. Engaging in this work during a pandemic is especially challenging.
Oftentimes, a crash course in highly technical aspects of care (flushing ports, inserting feeding tubes, cleaning wounds, managing LVADs, etc.) leaves one completely bewildered. This disjuncture between necessary specialized care exposes the schism in care work that overwhelms and burdens.
Image description: Image description: A woman sits on the floor leaning against the back of a couch. Her elbows are resting on her knees with her hands clasped together over her face, eyes closed. Image source: Pixabay.
Because of shelter-in-place orders, the pandemic has also heightened concerns about domestic violence, child abuse, elder abuse, and alcohol and substance use disorders. We consequently will need to ramp up behavioral health and trauma-informed care services. Sadly, history predicts how unlikely we are to effectively meet this challenge. Essential caregivers unable to work remotely have had to expose themselves and their children to increased risk of disease, because their children had to remain in daycare or in multigenerational spaces with no means to isolate.
Gendered care work can no longer hide under the auspices of family love and selflessness. Caregivers oftentimes die before the care receiver. There is nothing heroic or laudable about a preventable early death. Too much togetherness can breed resentment. There is always something needed, an ask or a want. There is little give in return. Even a sincerely offered “thank you” neither diminishes nor alleviates profound fatigue.
Recognize the gender inequity of care work and the harm such blindness inflicts.
Pave the way for long-term care access, regulation, and insurance.
Pay care workers (both in institutional and home health settings) a salary with PTO, retirement, and benefits (educational and promotion opportunities).
Provide paid family leave for family and friend care workers, so that they can focus on the care work they want to do without worrying about economic self-harm.
Ensure enhanced respite care and family mental health support.
Taking care of someone else’s s!#t is hard, labor-intensive work, both physically and mentally, and it must be recognized as such. We can no longer silently accept the gender discrimination inherent in care work. We all must bear the burden and the weight, and take care of each other’s s!#t.
Disclaimers: The title is gendered caregiving, which, for the purposes of this blog, focuses on the traditional gender binary of women and men doing caregiving. While clearly in the minority, men do provide unpaid care work. I afford no special credit for doing this work because one is a man. It is akin to saying, “my husband is babysitting the kids”—um, no they are doing the hard work of parenting. My goal is to highlight the burden of care work that is performed primarily by women. Women do not get gold stars for work that they have historically been expectedto do.
The author acknowledges her own lifelong role as a caregiver. I do not aim to speak to every person’s experience with doing this work. Instead, I seek to highlight that the continued gender inequity and unpaid labor of care work harms women. If we are to be a just society, it is imperative for us to take care of the caregivers.
Karen Kelly-Blake, PhD, is an Associate Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Medicine in the Michigan State University College of Human Medicine.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, July 30, 2020. With your participation, we hope to create discussions rich with insights from diverse perspectives.
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Center Assistant Professor Dr. Laura Cabrera and co-author Dov Greenbaum have written an editorial published in Frontiers in Genetics, titled “ELSI in Human Enhancement: What Distinguishes It From Therapy?”
The open access editorial, published June 23, is available in full from Frontiers in Genetics.
Avoiding the Impending Calamity: Our Ethical Responsibility
United Nations Children’s Fund (UNICEF) has warned that COVID-19 is disrupting life-saving immunization services around the world, putting millions of children in both rich and poor countries alike at risk of diseases like diphtheria, measles and polio. UNICEF, the Sabin Vaccine Institute and Gavi, the Vaccine Alliance are also worried that thousands of children could die needlessly from the diseases that were hitherto controlled through vaccination but are now being redundant because of the lockdown and compulsory quarantine by the government of the day. UNICEF Executive Director Henrietta Fore stated that there is going to be a real problem as many of these already conquered preventable diseases for children such as measles, diphtheria and cholera are in the increase across the world.
“Immunization is one of the most powerful and fundamental disease prevention tools in the history of public health,” said Dr Tedros Adhanom Ghebreyesus, WHO Director-General. “Disruption to immunization programmes from the COVID-19 pandemic threatens to unwind decades of progress against vaccine-preventable diseases like measles.”
There is no doubt Africa will be the worst hit by this quarantine and lockdown policy. In a place where lack of education and poverty are commonplace, the rebound of these preventable diseases as a result of improper policy and control implementation will be unprecedented in the near future after we are done with the pandemic. Most governments especially in Africa did not take into consideration the sustenance of immunization programs and were more focused on the COVID-19 pandemic – the devastating effect of the disease cannot be equated to some of these childhood preventable diseases.
The quarantine and social lockdown have resulted in a drop in vaccination rates leaving several numbers of children open to diseases that were hitherto prevented. There is a need to step up campaigning once again on the importance of sustaining immunization that has been in place before the COVID-19 pandemic.
The Philosophy of Objectivism in Public Health Emergencies Such as the Coronavirus Pandemic
The mandate from a responsible government to ensure and protect the health of the public is an inherently moral pursuit with obligation to care for the well-being of its communities. In doing so the government should refrain from immediately engaging extreme measures. Further, the widespread deployment of uniform measures should first understand the peculiarity of the environments in which they will operate. Africans across many nation states, for example, live in a diversity of settings where communicable diseases are all too common. Many individuals live in poor living conditions necessitating proper advance planning of COVID-19 pandemic management. With that management, such planning should carefully consider the sustainability of the on-going vaccinations of childhood preventable diseases. Vaccinations have had an enormous beneficial impact on population health, and the related prevention of disease has been one of the single greatest public health achievements of the last century.
The questions I pose center on an exploration of which disease should rightly be given priority based on established fact. I question why there has been so much panic and fear about COVID-19. With the introduction of this novel disease, with a mortality rate lower than that of those diseases preventable by vaccination, should we permit gains made in vaccinating children against common childhood diseases to stop? With respect to more preventable diseases, especially those that affect children, why is there such an emphasis on COVID-19? Should mothers and caregivers give precedence to the COVID-19 pandemic, deferring their children’s routine immunization? Again, in an isolation and quarantine situation with strict governmental constraints on movement, how might childhood immunizations continue, especially in rural areas (assuming that accessible immunization centers are even open and operating)?
Currently, keeping to a routine immunization regimen by parents and caregivers is a challenge, especially for those who come from remote areas. The government, through the health ministry, should ideally put procedures in place for the duration of the pandemic to encourage all women to ensure that their children get access to these vaccines. It would be tragic to view this situation as a tradeoff, thus incurring the risk of returning to the horrors of polio, diphtheria, cholera and smallpox, and in doing so, allowing many to die of already controllable diseases.
Government Needs Proper Strategizing, COVID-19 Should Not Stop Normal Existence
There is no doubt that ethical challenges abound in quarantining people compulsorily, potentially against their decisions and will because of the COVID-19 pandemic. But more challenges abound when the government fails to take the precautionary measures necessary to ensure the continuity of the vaccination program for known and preventable childhood diseases. Because some of the latter are transmitted person-to-person there is, therefore, a need to provide both individual and public protection against the disease in addition to focusing on COVID-19. Though the COVID-19 pandemic may pose a health threat to many people across the globe, I suggest that there is even greater threat to personal liberty by compulsory quarantine and economic lockdown.
There is suspicion among some that the COVID-19 pandemic has been exaggerated, and that the measures currently in place across the world are not supported by the data. This doubt is illustrated by the Tanzanian President who had samples collected from goat, pawpaw and sheep for COVID-19, assigning human names to those animal samples. Reportedly, the related test results were positive, thus feeding the concerns on the accuracy of information regarding the incidence and prevalence of the infection, influence of co-morbidities, etc.
Demystifying the COVID-19 Pandemic While Achieving Health for All
Conflicting data notwithstanding, there are those who hold the opinion that measures taken by governments around the world are based on fear and speculations, and ultimately, might prove ineffective. It is argued here, that denying people their right to personal movement has a preventable impact on established vaccination programs, programs with known effectiveness in the reduction of mortality among children. High numbers of people are still being infected by those preventable diseases. It might also be argued that at present the imposition of a uniform isolation strategy is premature, especially with conflicting reports on its mode of transmission and degree of virulence. Perhaps it would be prudent to lay emphasis on practicing safe habits, building and supporting one’s immune system, maintaining proper hygiene, social distancing, and taking care of those most vulnerable ones among us such as the children and the elderly.
Felix Nzube Chukwuneke, is a Fogarty Trained Bioethicist and Professor of Oral & Maxillofacial Surgery and Dean of Dentistry in the College of Medicine, University of Nigeria Nsukka (UNN) Enugu Campus. He is Chair of the UNESCO Bioethics Unit at the College of Medicine, University of Nigeria; Chair of the College of Medicine Research Ethics Committee (COMREC) and Chair of the Eastern Nigeria Research Ethics Forum (ENREF).
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, July 9, 2020. With your participation, we hope to create discussions rich with insights from diverse perspectives.
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Center Acting Director and Professor Dr. Leonard Fleck has a commentary in the July 2020 issue of Cambridge Quarterly of Healthcare Ethics. The commentary is titled “Medical Ethics: A Distinctive Species of Ethics.”
Dr. Fleck writes, “Like the sciences, medical ethics has evolved with its own distinctive ethical norms and understandings as a result of emerging technologies (ICUs, organ transplantation, preimplantation genetic diagnosis, and so on) as well as chancing political, economic, and organizational structures and practices relevant to health care.”
The full text is available online via Cambridge Core (MSU Library or other institutional access may be required to view this article).
As members of the MSU community continue to work remotely and practice social distancing, Brews and Views has pivoted to online-only “at home editions” of the series that addresses the implications and ethical considerations of biomedical innovations and topics at the forefront of scientific investigation.
The first Brews and Views: At Home Edition was held on March 20 on the topic “Novel Coronavirus Pushes our Limits— We Need to Push Back, Thoughtfully and Fast.” Discussants were Brett Etchebarne, MD, PhD (College of Osteopathic Medicine), Leonard Fleck, PhD (College of Human Medicine), Maria Lapinski, PhD (College of Communication Arts and Sciences and College of Agriculture & Natural Resources), and Richard Lenski, PhD (College of Natural Science). Dr. Chris Contag, Director of the Institute for Quantitative Health Science & Engineering (IQ) and Chair of the Department of Biomedical Engineering, served as moderator.
The group of experts addressed scientific, communication, medical, societal, and ethical challenges presented by the novel coronavirus called SARS-CoV-2 that causes COVID-19 disease. Their goal was to inform and help those in the audience as we all navigate this global crisis. A recording of the event is available to watch on the IQ website.
On April 17, a second “at home edition” event took place, titled “COVID-19 and Our Children: Worry Now or Worry Later?” Moderators Dr. Chris Contag and Dr. Keith English, Professor and Chair of the Department of Pediatrics and Human Development, were joined by discussants from across the university: Carrie Shrier (MSU Extension), Kendal Holtrop, PhD (College of Social Science), Dawn Misra, MHS, PhD (College of Human Medicine), and Amy Nuttall, PhD (College of Social Science and C-RAIND).
Given the various ways that the current pandemic will impact children, they considered several questions: How will social distancing impact children? How can we use online learning to facilitate education? How can we prepare for the next epidemic? How do we deal with the direct and indirect effects and the social sequelae of this pandemic? How do we effectively communicate information to our children without increasing or generating fear?
To receive notice of future Brews and Views events, subscribe to IQ’s email newsletter. The next Brews and Views: At Home Edition is scheduled for Friday, May 29 from 5:00-7:00 pm on “The Dollars and Sense of Economic Convalescence from COVID-19.” The discussion will feature members of the local business community as well as Sanjay Gupta, PhD, Dean of the Eli Broad College of Business. Registration for the online event is open.
In the advent of the novel coronavirus (COVID-19) pandemic, there is an underlying belief in the United States that a COVID-19 vaccine may be the Holy Grail, the silver bullet to assuage the pandemic and open up the quarantine doors. Yet, there is a divide in the United States regarding vaccination acceptance. The Centers for Disease Control and Prevention (CDC) reports less than 50% of adults receive the vaccine for influenza (flu). In the 2017-2018 flu season, 37.1% received the vaccine, the lowest rate in ten years. The rate increased to 45.3% in 2018-2019. In a recent study reported in The Boston Globe, authors Trujillo and Motta found that 23% of persons surveyed said they would not get the COVID-19 vaccination. The study breaks it down further regarding anti-vaccination attitudes (also known as “anti-vaxxers”) and found that 16% of respondents identified themselves as anti-vaxxers, and of those, 44% said they would not get the COVID-19 vaccine. The researchers contend that anti-vaccine sentiment still exists in spite of the deadliness of COVID-19.
Image description: An illustration of a light green circle with a vaccination syringe in the center that is surrounded by green viruses. Image source: Alexandra_Koch/Pixabay.
As Americans, we want what we want how we want it. For some of us, the vaccine cannot come fast enough, and it better be effective. Others don’t plan to get it even when it is available. I have set up a dichotomous choice, but indulge with me in thinking through the debate. Many philosophical and ethical discussions occur in academic research—and particularly in mainstream and social media—highlighting opposing views of those who choose to vaccinate and those who do not. Often, these two positions fall along partisan lines, but not in the way that we might expect. The anti-vaccine movement began with the political left, but spread to the religious right, conservatives, and libertarians.
Approximately 20 years ago, a flawed but influential study linked the Measles, Mumps, Rubella (MMR) vaccine to autism. It started a hot debate fueled by staunch supporters of anti-vaccination from both sides of the aisle. The anti-vaxxer movement took hold with powerful liberal voices, but in recent years has become convenient for the religious and far-right who aim to keep government out of personal decisons. A 2015 Pew Research Center Study found that 12% of liberals and 10% of conservatives are opposed to vaccination. Herein lies my question: to what can we attribute the strong stance that anti-vaxxers take regardless of political position? Why does this question matter? America is a free country. However, the movement warrants an understanding in the midst of a pandemic of an extremely deadly disease whereby science tells us that a vaccine may mitigate infections and death.
Facts are stubborn things
One commonality between the liberal and conservative anti-vaccine stance is a lack of trust in science and medicine, and belief in “alternative facts.” This is particularly true within the anti-vaxxer movement. Some don’t trust science based on real life experiences or notable past deceptions in public health interventions, such as the Tuskegee Experiments, Havasupai Diabetes Project, Henrietta Lacks, etc. Antithetically, the autism study was deceptive by negating the lifesaving MMR vaccine as harmful. This myth has persisted over time, fueled by the anti-vaxxer movement and the discount of science as faulty, dangerous, driven by big government, and against individual choice. Facts versus feelings further complicates the human cognitive decision-making process. For example, in the case of vulnerable children with autism for whom science has not fully unraveled a cause or treatment, anti-vaxxers feel they can place blame on the MMR vaccination. Feelings contribute to the uptake of faulty information and fake news via social media, in turn drowning out the facts.
Vaccines have been one of the greatest public health successes in the world due in large part to herd immunity. Herd immunity comes with centuries of science resulting in the reduction of deadly diseases. The cursory explanation for herd immunity is: if a large proportion of a community is vaccinated, the lower the collective risk to the community. The algorithm suggests at least 80-90% of a community needs to have immunity to a disease and/or be vaccinated to protect the proportion of persons with compromised health conditions who cannot be vaccinated. The range in vaccination rates is dependent on the effectiveness of the vaccine. We have seen the eradication of smallpox and polio because of a highly effective vaccine delivered to most of the children in the U.S. This was achieved through mass immunization and extremely effective public health messaging. Most recently, buy-in to herd immunity has devolved from a fear of deadly disease to a fear of the very thing that prevents deadly disease. As a result, we have seen a resurgence in measles, which can be deadly for children with compromised immune systems. The science of herd immunity is powerful but relies on collectivism and social responsibility. The requirement that a large proportion of a community needs to be vaccinated to protect others cuts across American values of individuality and freedom of choice.
Before COVID-19, we lived in a different era with some generations never experiencing or witnessing extremely contagious, deadly diseases, confirming a belief that we can individually control our own disease states. Now, we are faced with a history making, highly infectious, deadly disease. Will we adopt a philosophy of sacrificing a bit of comfort by quarantining, wearing masks, or experiencing the pinch of a vaccination to save the lives of others? The jury is still out on that debate. We have witnessed segments of our society rebel and even retaliate against the idea of vaccination. Yet, scientists are working faster than ever to develop an effective COVID-19 vaccine, and the U.S. government has promised to enable the Food and Drug Administration (FDA) to relax clinical testing protocols to push the vaccine out in order to save lives. No, the vaccine will not be the silver bullet, but it has the potential to augment natural immunity to work as a tool of collective protection. Is the deadliness of COVID-19 enough to override the need for anti-vaxxers to hold onto personal choice?
This is not an indictment on one’s personal choice not to be vaccinated, but an opportunity to ponder individuality versus social responsibility for the greater community benefit. COVID-19 has been a game changer on human behaviors, requiring us to social distance and wear masks for the greater good. Will we embrace social responsibility and be vaccinated to save lives? How do we reconcile our individualism with the adoption of collectivism?
Sabrina Ford, PhD, is an Associate Professor in the Department of Obstetrics, Gynecology and Reproductive Biology and the Institute for Health Policy in the Michigan State University College of Human Medicine. Dr. Ford is also adjunct faculty with the Center for Ethics and Humanities in the Life Sciences.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Monday, June 1, 2020. With your participation, we hope to create discussions rich with insights from diverse perspectives.
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In the words of guest Mark Van Linden, “adversity can present itself to anybody at any time.” This episode features a personal narrative of life with a spinal cord injury. Center Associate Professor Dr. Karen Kelly-Blake is joined by Mark Van Linden, MSA, and president of Adversity Solutions LLC. Mr. Van Linden experienced a spinal cord injury in 2009. In conversation with Dr. Kelly-Blake, Mr. Van Linden candidly shares his story, discussing his life before and after his injury, and addressing not just the physical impact, but the mental, emotional, and relational impact of becoming paralyzed at age 39.
This episode was produced and edited by Liz McDaniel in the Center for Ethics. Music: “While We Walk (2004)” by Antony Raijekov via Free Music Archive, licensed under a Attribution-NonCommercial-ShareAlike License. Full episode transcript available.
About: No Easy Answers in Bioethics is a podcast series from the Center for Ethics and Humanities in the Life Sciences in the Michigan State University College of Human Medicine. Each month Center for Ethics faculty and their collaborators discuss their ongoing work and research across many areas of bioethics. Episodes are hosted by H-Net: Humanities and Social Sciences Online.
Center Acting Director and Professor Dr. Leonard Fleck is the author of an article published in the April 2020 issue of the Journal of Medical Ethics. “Just caring: screening needs limits” is in response to “Arrogance of ‘but all you need is a good index finger’: A narrative ethics exploration of lack of universal funding of PSA screening in Canada” by Dr. Jeff Nisker.
Abstract: This personal narrative tugs at the heart strings. However, personal narratives are not sufficient to justify public funding for any screening policy. We have to take seriously the ‘just caring’ problem. We have only limited resources to meet virtually unlimited health care needs. No doubt, screening tests often save lives. The author wants public funding for prostate-specific antigen screening for prostate cancer. However, why only prostate cancer? Numerous cancers at various stages can be screened for. Are all of them equally deserving of public funding? What about screening for a very long list of other life-threatening medical disorders? There is nothing ethically special about cancer. Where does the money come from to pay for all these screening tests? Do we reduce expensive life-prolonging care for patients in late-stage diseases? Ultimately, a balance must be struck between saving statistical lives through screening and saving identifiable lives in the intensive care unit. Achieving a just balance requires rational democratic deliberation as justification for these choices, not personal narratives.
The full text is available online via BMJ Journals (MSU Library or other institutional access may be required to view this article).
In a state of public health emergency, such as the one brought on by COVID-19, different countries have invoked extra powers to help mitigate the public health threat. These special powers would under normal circumstances be considered infringements on our liberty and privacy. A recent Wired article addressed that big tech companies like Google and Facebook are having discussions with the White House to share collective data on people’s movement during the current pandemic. For example, using phone location data or private social media posts to help track whether people are remaining at home and keeping a safe distance to stem the outbreak, and to measure the effectiveness of calls for social distancing. In the U.S., the government would generally need to obtain a user’s permission or a court order to acquire that type of user data from Google and Facebook. But as mentioned above, the government has broader powers in an emergency.
Obtaining this data could help governments prepare for the coming weeks of this public health emergency. For example, smart phone location data analysis from the New York Times has shed light on the disparities regarding which groups can afford to stay home limiting their exposure to the coronavirus. This is certainly useful to better understand the spread of the disease in different areas and across different socioeconomic groups. Facebook is working with Chapman University and other collaborators to develop maps that show how people are moving between areas that are hotspots of COVID-19 cases and areas that are not, and such maps could be useful in understanding the spread of the disease. Announced in a news release this month, Apple and Google have launched a joint effort to help governments and health agencies reduce the spread of the virus by using application programming interfaces and operating system-level technology to assist in enabling “contact tracing.”
Image description: an illustrated image of a pink brain coming out of the top of a person’s head; a magnifying glass with a brown handle, silver rim, and blue lens is above the brain as if looking into it. The background is light green. Image source: artwork from vecteezy.com.
While this sounds promising, one of the main obstacles has to do with concerns over the privacy of users whose data might be handed over by the companies. It would be unprecedented for the government to openly mine user movement data on this scale. To add to the issue, the current state of affairs where many more people now rely on digital tools to work or attend classes remotely, as well as to stay connected with family and friends, makes the amount and type of data gathered richer. However, as pointed out in a New York Times editorial, we should not sacrifice our privacy as a result of this pandemic.
Another relevant concern related to the use of collective data is government surveillance. For example, the use of mobile data to track the movement of individual coronavirus patients in China or South Korea can be seen as more controversial uses of the collected data.
It is certain that during this challenging time, data sharing and collaboration between academia, governments, civil society and the private sector is key to monitor, understand and help mitigate this pandemic. However, without rules for how companies should anonymize the data, and without clear limits on the type of data they can collect and how the data could be used and kept secure by researchers and governments, the perils might be greater than the promises. Furthermore, we need a clear path for what happens after all of this is over. For example, people should be given the option to delete user profiles they created as part of new work and school arrangements.
Given past scandals around privacy and transparency surrounding these big tech companies (in addition to the several scandals with the current government administration), it is hard to trust that the idea would be to only gather aggregate trends, and that they would not collect any identifying information about users, or track people over long periods beyond the scope of the pandemic.
Civil groups and academics have discussed the need to protect civil liberties and public trust, arguing for the need to identify best practices to maintain responsible data collection, processing, and use at a global scale.
The following are some of the key ideas that have been discussed:
In a public health emergency like the one we are living, some privacy intrusions might be warranted, but they need to be proportionate. For example, it would not be proportionate to gather 10 years of travel history of all individuals for the type of two-week incubation disease we are dealing with.
This type of government and big tech company partnership needs to have a clear expiration date, as there is a hazard for improper surveillance that could come with continuation of data gathering after the crisis is over. Given the historical precedents on how life-saving programs used in a state of emergency have continued after the state of emergency was resolved, we as a society need to be very cautious with how to ensure that such extraordinary measures do not become permanent fixtures in the landscape of government intrusions into daily life.
There is a need to be transparent with the public about any government use of “big tech data” and provide detailed information on items such as the information being gathered, the retention period, tools used, and the ways in which these guide public health decisions.
Finally, if the government seeks to limit a person’s rights based on the data gathered, the person should have the opportunity to challenge those conclusions and limits.
A few weeks ago the European Data Protection Board issued a statement on the importance of protecting personal data when used in the fight against COVID-19. The statement highlighted specific articles in the General Data Protection Regulation legislation. For example, Article 9 mentions that processing of personal data “for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health” is allowed, provided such processing is proportionate to the aims pursued. In the U.S. we are far from having such a framework to start discussing data collection, sharing, and use under the current circumstances.
There is no doubt as to potential public health benefits associated with analysis of such data and surveillance. For example, the utility of identifying individuals who have traveled to hotspot areas, or tracing and isolating contacts of those infected. However, without a clear framework on how digital data collection companies will address privacy and surveillance concerns, the more cautious we should be about access to other areas of our life, access that would also be shared with governments. Without due caution, not only will public trust continue to be undermined, but additionally people will be less likely to follow public health advice or recommendations, leading to even worse public health consequences.
Laura Cabrera, PhD, is an Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Translational Neuroscience at Michigan State University.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, May 7, 2020. With your participation, we hope to create discussions rich with insights from diverse perspectives.
Article narration by Liz McDaniel, Communications Assistant, Center for Ethics.
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