Tag: global health

International Development and Health: Rethinking Global Pessimism About the Future

By Sean A. Valles, Director and Associate Professor, Center for Bioethics and Social Justice, College of Human Medicine, Michigan State University

Pessimism about the future is rising around much of the world. Meanwhile, the social institutions of democracy are experiencing slipping public support. The global COVID-19 pandemic has also drawn attention to the importance and fragility of trust.

Unfortunately, none of this should be considered new. The pandemic arrived more than a decade into a trend of declining trust in social institutions. More recently, news reports of fraud and corruption, such as misuses of pandemic relief funds, can push us to see the world as filled with people undeserving of our trust or care. Such an observation can start to look like a moral justification for our own selfishness: “the system is corrupt so I’m just going to get mine and look out for myself.”

We do not need to resign ourselves to selfishness and isolation.

Group of surgeons wearing blue medical scrubs and face masks.
Image description: Cropped shot of a group of surgeons wearing blue scrubs and face masks performing a medical procedure in an operating room. Image source: PeopleImages/iStock.

Economist Elinor Ostrom won the Nobel Prize for showing how examples from around the globe undercut the pessimistic but widespread view among scholars that the “tragedy of the commons” is practically inevitable—the idea that fishers are doomed to selfishly overfish the waters they share with other fishers, etc. That theory of inevitable selfishness and tragedy is rooted in assumptions of human nature that intuitively resonate with a lot of people, which made Ostrom’s debunking work all the harder. Not coincidentally, Garrett Hardin, the creator of a supremely pessimistic view of humanity, was a vocal racist and nativist who saw his pessimism about cooperation as grounds for treating the less privileged peoples of the world as potential invaders threating to take resources from the metaphorical “lifeboat” occupied by the privileged. Extreme pessimism about the possibility of cooperation and solidarity is toxic.

Extreme pessimism about human nature oversimplifies human behavior. Even overtly bad and apparently selfish behavior by others can be evidence of the possibility of future cooperation. For instance, recent research on academic dishonesty by students has found that cheating and plagiarism are driven in part by a desperate desire to be allowed to continue learning as part of a school’s community.

I see the COVID-19 pandemic as a series of failed but fixable attempts at ethical collaboration, and not evidence that cooperation is hopeless during crisis. Yes, the pandemic was rife with selfish acts from those previously mentioned cases of financial misconduct, extending to the problem of wealthy countries quickly buying up much of the global vaccine supply. Disturbingly, many people have felt ethically self-assured in their selfishness, such as a professor who approached me after one of my pandemic ethics lectures, complaining to me that COVID-19 vaccines were surely unethical because they allowed “the weak” to survive nature’s culling.

Despite the innumerable examples of bad behavior, there were also innumerable attempts at cooperation that either succeeded or showed enough of a spark of success that future success seems possible. Consider the case of Dorothy Oliver and Drucilla Russ-Jackson, who defied conventional wisdom about the stubbornness of vaccine skeptics by using kindness and respectful human connections to convince nearly their entire rural Alabama town to get COVID-19 vaccinations. At the global level, the World Health Organization, World Bank, and Gavi the Vaccine Alliance (among many others) all made strides toward helping ease the unethical burdens of the pandemic harming the vulnerable of the world. Each organization was in large part prevented from doing better, however, due to running into needless hurdles such as national governments resisting attempts to get more transparency in their national public health data.

International development is an endeavor based on a fundamental optimism: the conviction that helping faraway strangers is a worthwhile task. As became increasingly clear over the 20th century, ethically helping faraway strangers is no easy task. We can easily hurt those whom we seek to help. But as with the instructive failed efforts during the pandemic, the point is that it remains possible for cooperative efforts to do better next time.

In the spirit of the desire to always do better next time in international development, the Center for Values in International Development has partnered with the Michigan State University Center for Bioethics and Social Justice. Our centers share a fundamental optimism that despite the injustices of the world, and the world’s mixed track record of attempts to make them better, the goal of creating a more equitable world is well worth working for.

One obstacle faced by our two Centers’ endeavors is that global health work and global development work remain partly stuck in their own silos, such as in the ways national and international agencies divide up their roles. Yes, effective and meaningful international development work does need to include the development of societies’ health infrastructure, but not to the exclusion of focusing on wider, intersectional issues of healthcare justice. Sectoral segmentation works against wider inclusion, the acknowledgment of intersectionalities, and consideration of structural issues in how we view human wellbeing. It remains all too common to think of health development work as another slice of the overall pie of development needs, alongside transportation development, housing development, better sewage treatment, financial management capacity strengthening, etc.

In my work, I emphasize the importance of distinguishing between the healthcare system vs. the health system. The healthcare system is just one part of the much larger set of social institutions that steer the health of populations, such as the agricultural systems that determine which foods are available in markets and at what prices. So, while healthcare (hospitals, medicines, and such) should get only a slice of the budgetary pie in international development budgets, it is important to remember that housing policies are health policies too; the same goes for transportation policies and numerous other policies. Housing security is crucial for a healthy life. Transportation is essential for meeting other life needs (shopping, accessing healthcare, etc.), while poor transportation policies can lead to air pollution and other unwanted side effects.

The language that began emerging in the 2000s is that we need “health in all policies.” That phrase has two meanings. First, it’s a call to action, asking that we make sure a society’s policies are conducive to health. For instance, development programs that encourage farmers to grow cash crops also need to take into account health impacts, such as the availability of crucial food crops and the related impacts on community nutrition. Second, “health in all policies” is a description of the way the world works. Development programs seeking to change agriculture and other vital parts of social life simply are also health policies, whether we recognize it or not. International development work affects the health of societies in innumerable ways, and often ways that get too little attention. The Center for Values in International Development brings much-needed explicit attention and analysis to the ethical dimensions of international development work and humanitarian response; we need ethics in all policies. The Center for Bioethics and Social Justice enthusiastically joins in that effort, since there is health in all policies, and our Center specializes in getting attention and analysis to the ways that such health impacts positively or negatively contribute to making health systems more “compassionate, respectful, and responsive to people’s needs, so that equity, inclusion and social justice are available to all.”

This piece was also published by the Center for Values in International Development

COVID-19 vs. Childhood Immunization? A Bioethics Perspective from Nigeria

Bioethics in the News logo

This post is a part of our Bioethics in the News series

By Felix Chukwuneke, MD

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.”

[WHO News release, May 22, 2020]

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.

A 13-year-old male is receiving an intramuscular vaccination in the deltoid muscle from a nurse. His mother is standing behind him with her hand on his shoulder; they are smiling.
Image description: 2006 Content Provided by Judy Schmidt. This photograph shows a 13-year-old male receiving an intramuscular vaccination in the deltoid muscle, from a nurse. His mother is standing behind him with her hand on his shoulder; they are smiling. Image source: Centers for Disease Control and Prevention.

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 photo

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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Brews and Views events pivot to online format

Brews and Views icon green and purple 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.

Brews and Views is presented collaboratively by the Center for Ethics and Humanities in the Life Sciences and the Institute for Quantitative Health Science & Engineering at Michigan State University.

Trust and Transparency in Quarantine

Bioethics in the News logoThis post is a part of our Bioethics in the News series

By Parker Crutchfield, PhD

As of February 11, more than 1,000 people have died from the novel coronavirus, the vast majority of them in China. As the virus spreads, China has been implementing the largest quarantine in human history. The virus has spread beyond the borders of China, and has been observed in at least twenty-four countries. There is no way of knowing how effective the quarantine has been. It obviously didn’t prevent the virus’s spread, though it’s likely fewer people are infected because of it. Part of the reason that the quarantine has not worked to prevent the spread is that many in China evidently don’t trust those implementing the quarantine. About five million people left Wuhan before the quarantine locked down the city. And the images in this video are certainly not of a family trusting their government.

Trust and quarantine
A prominent account of what makes public health interventions permissible implies that public trust is necessary for public health interventions to be morally permissible. As a general rule, this is false. Public trust in Flint has been totally undermined. But in that city, public health interventions on the water supply are not only permissible, they are obligatory. So, it’s not true that trust is necessary. But that is not to say that public trust isn’t critical to the value of a public health intervention.

Trust and mistrust street signs image
Image description: two green street signs with white lettering, one reads “trust” with an arrow pointing to the right, the other reads “mistrust” with an arrow pointing to the left. Image source: Pixabay.

The value of a public health intervention, and its moral authority, is primarily a matter of the value of the benefit it achieves (the value of the cases prevented) minus the disvalue of the burdens it requires people to bear (the disvalue of social isolation). Trust may not be necessary, but it certainly impacts the benefits and burdens of a public health intervention. There is significant benefit in not having five million people evade a quarantine because they mistrust those implementing it. Who is more burdened, the family who fights tooth and nail the officials forcibly removing them from their home, or the family who goes willingly because they trust them? Mistrust creates burdens; trust promotes value. In other words, mistrust encourages people to break quarantine. If the goal is to encourage social isolation and compliance, public trust is key.

Trust and transparency
If trust is so important to the effectiveness of a quarantine, what factors promote trust? That same theory of the morality of public health interventions derives the value of transparency from the claim that transparency promotes trust. The idea is that the more open policy decisions, the more the public will trust them. As before, this is not generally true. Some research indicates that transparency actually undermines trust (De Fine Licht, 2011; Grimmelikhuijsen, 2014).

800px-A_Screen_Display_During_Wuhan_Coronavirus_Outbreak
Image description: A screen display on the side of a building showing “early discovery, early report, early quarantine, early diagnosis, early treatment” during the Wuhan coronavirus outbreak in Hefei, Anhui, China. Image source: Zhou Guanhuai/Wikimedia Commons.

That is, the more people know about policy implementation the less they trust the people implementing it. If accurate, this research suggests instead that if we want people to trust public health policies, information should be withheld from them. This is in line with earlier research that suggests what people really want is for decision-makers to be empathetic and non-self-interested and that, if they are, for them to make mostly non-transparent decisions. People may want “stealth democracy” (Hibbing and Theiss-More, 2002).

So, probably it is not generally true that transparency promotes trust. But quarantine might be a special case. When the public already mistrusts those implementing public health policies, it’s not clear that there is any way to rebuild trust other than by being transparent. China was already in a tough spot, after their mishandling of the SARS outbreak in 2003, about which officials withheld information from the public and the global health community. Combined with the attempted silencing of the coronavirus whistleblower and his recent death, officials’ actions set the stage for a mistrustful public and less effective quarantine.

The next outbreak
Given officials’ actions in response to SARS, the public response to attempts to control coronavirus was probably never going to be trusting. Regardless of when the next outbreak occurred, the public was never going to trust the interventions to control it, whatever they happened to be. That was determined in 2003. Transparency now won’t help trust now, and so it won’t help the effectiveness of the present quarantine or any of the other interventions, such as the disinfectant now being sprayed. The damage to the present is done. Sadly, given that officials have responded like they did in 2003, interventions aimed at controlling their next outbreak, whenever that happens to be, will be upon a mistrusting public. When that time comes, if officials choose to quarantine, it seems likely that that quarantine will elicit similar responses: people will evade and resist, grabbing door frames as they are pulled from their homes. The virus will not be contained as well as it could have been, and more people will get sick and die. Present transparency could have promoted future trust, greater compliance, and prevented sickness and death, but that opportunity has come and gone.

There is a lesson for local officials as they try to intervene on the ongoing water crisis in Flint, the PFAS scare in West Michigan, and, in my hometown, the threat of mosquito-borne illness. The lesson is: transparency now purchases trust later. And that trust may prevent suffering and save lives.

parker-crutchfield-cropParker Crutchfield, PhD, is Associate Professor in the Program in Medical Ethics, Humanities, and Law at the Western Michigan University Homer Stryker M.D. School of Medicine, where he teaches medical ethics and provides ethics consultation. His research interests in bioethics include the epistemology of bioethics and the ethics of enhancement, gene editing, and research.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, March 5, 2020. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.

More Bioethics in the News from Dr. Crutchfield: Public Health Crisis Warrants Liberty Restrictions; We Should Tolerate and Regulate Clinical Use of Human Germline Editing

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The Ethics of Becoming an Adult in a Health Research Setting in Africa

Bioethics in the News logoThis post is a part of our Bioethics in the News series

By Rose Mwangi

It is three years since the Centers for Disease Control and Prevention (CDC) reversed course to recommend that 11- to 12-year-old girls receive two doses of HPV vaccine to protect against cancers caused by human papillomavirus (HPV) infections, administered at least six months apart. This then overruled the previous “three dose” recommendation – but the CDC added the caveat that “teens and young adults who start the series later, at ages 15 through 26 years, will continue to need three doses of HPV vaccine to protect against cancer-causing HPV infection.”

When either recommending a health intervention or conducting research among adolescents (11-12 years), ethical principles require that in addition to the rightful consent processes, privacy and confidentiality especially should be observed. In that light, countries need to ensure that they meet some requirements of legal, ethical and moral issues pertaining to such situations. However, when it comes to adolescents, there commonly is some uncertainty about a proper ethical balance between protection from risks, confidentiality, privacy and the possible countervailing need for parental consent.

Global health
Image description: a black and silver stethoscope is curved around a small globe on a white background. Image source: Marco Verch/Flickr Creative Commons.

In resource-poor African settings, health access barriers are paramount, and they present major impediments to national and regional development across the continent. Additionally, before recommendations such as the aforementioned CDC HPV advice can be implemented, the pragmatic reality of the particular circumstances needs to be taken into consideration. There are other similar recommendations that are influenced by the vulnerabilities of women’s reproduction that fall into this same uncertainty.

A lack of clarity in ethical guidelines within African nations makes any attempt to follow the CDC recommendations a challenge. Moreover, there are additional dilemmas encountered when trying to follow basic ethical principles. These complexities influence the follow-up treatment for adolescents. In many cases it is the adolescent’s parents who take the primary role in decision making, oftentimes excluding those children in making decisions about their own health, and sometimes even denying them the potential benefits of health-preserving interventions. In essence, such African adolescents are left in a confused state of being both children and adults.

Using illustrative examples below, I draw from experience and insight in Tanzania. I make the case that the need for parental consent needs to be revisited so as to best customize the fit of that need to certain settings in reproductive health.

Contraceptive services
In many African countries the law is silent on the age a young person may access contraceptives. For example, according to a research conducted in Tanzania, 15 is the youngest age at which girls use contraceptives. Yet girls can obviously conceive before that age, and there is no law that prevents the usage of contraceptives at any age. Therefore, I argue that the default legal position requiring parental consent should be overruled; this would allow more freedom for young girls who wish to have access to reproductive control.

Age of consent for HIV testing
The age of consent for HIV testing is 16 years in Tanzania. Testing of persons under the age of 16 must be carried out with the consent of parents or legal guardians. However, the law does not stipulate a particular age at which an adolescent’s HIV status can be reported directly to him/her. It says only that test results are confidential and shall be shown only to the tested person with an exception of those under 18 years of age.

5461836185_bd78b5c075_b
Image description: The flag of Tanzania waves on a flagpole with blue sky in the background. Image source: Stefano C. Manservisi/Flickr Creative Commons.

Age of consent for Antiretroviral Therapy (ART)
In Tanzania, the 2001 national AIDS control policy provides universal access to ART. However, there are no explicit rules regarding either age specification or consent. The policy specifies that “people living with HIV and AIDS have the right to comprehensive health care and other social services including legal protection against all forms of discrimination and human rights abuse.” Parental consent for minors therefore should not have a role in accessing ART.

Age for consent and access for Pre-exposure Prophylaxis (PreP) and Post-exposure Prophylaxis (PEP)
In the same way that HIV-infected young people should have the rights and obligations to which they are entitled, so too should they have ready access to PreP and PEP. However, since no explicit rule is in place with regard to the age of consent, might we then safely/ethically assume that any person irrespective of age should have access to PreP? Similarly, it is not clear whether an adolescent should be allowed access to, or alternatively, be prohibited from PEP as the law and guidelines are silent on access for young persons.

Abortion and post-abortion care
In Tanzania, as in all other African countries, abortion is illegal. Tanzanian law is very clear on the consequences. However, there are no age-specific-rules regarding the age of consent for access to antenatal care (ANC). Indeed, when an adolescent becomes pregnant, regardless of the young woman’s age, health workers do not require parental consent for ANC. Therefore, I maintain that this dis-equal access amounts to a contradiction in the ethics of care.

Access to HPV vaccines and cervical cancer screening and treatment
Returning to my first point, globally, Tanzania has one of the highest incidences of cervical cancer. To address this health concern, the country recently has agreed to provide HPV vaccine for girls aged 9-13 years. What then is the parental role?

This message from CDC Director Tom Frieden, MD, MPH, in a 2016 press release could perhaps be viewed as clear and feasibly be implemented in a developed country:

“Safe, effective, and long-lasting protection against HPV cancers with two visits instead of three means more Americans will be protected from cancer. This recommendation will make it simpler for parents to get their children protected in time.”

This CDC claim about simplicity presumes that such parental consent would be forthcoming and would therefore equate to full HPV protection for the adolescent. But as I’ve pointed out, that might not be the case in Tanzania and other developing countries.  Perhaps we then should take a new approach in dealing with ethical issues related to accessing health in low-resource settings. Parents have an important role in ensuring the health of the adolescents, yet as I’ve demonstrated in the above, in those areas of a sensitive reproductive nature, the parental role may need to be secondary so as to ensure the adolescent’s health and well-being. If reproductive health interventions among adolescents are to succeed, perhaps we need to reach out directly to adolescents. When considering the daunting health risks adolescents face in low-resource settings, there is a need to lower access barriers and allow adolescents to consent on their own behalf. This then would give them the freedom to decide when and with whom they wish to share such sensitive information, and to directly benefit from available health interventions. This needed policy shift would place the ethics of becoming an adult in resource-challenged settings on another level.

Rose Mwangi photoMs. Rose Mwangi is a past beneficiary of an NIH Fogarty Fellowship at the Michigan State University Center for Ethics and Humanities in the Life Sciences. She has participated as an observer in Community Research IRBs at Michigan State University. Ms. Mwangi is very involved in Pan-African Bioethics and does research ethics in Tanzania. She has been involved in international clinical trials playing a key role in developing consent processes for rural and low literate communities; she has done important systematic qualitative studies advocating for social responsibility among global health researchers. Her recent milestone is leading the development and integration of Bioethics curriculum at Kilimanjaro Christian Medical University College (KCMUCo) as part of the European and Developing countries Partnership (EDCTP) in which UK and Tanzania are key stakeholders. Ms. Mwangi Co-Chairs the Institute Review Board (IRB) and is the Bioethics and Research Ethics instructor at KCMUCo and other medical institutions in Tanzania.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, July 11, 2019. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.

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The face of Zika: women and privacy in the Zika epidemic

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series.

By Monica List, DVM, MA

A quick online search for “Zika” reveals two kinds of images, those of vectors and those of victims. Images of Aedes sp. mosquitoes, vectors of the Zika, Dengue, and Chikungunya viruses, dominate the virtual landscape, followed closely by images of infants and children with microcephaly, as well as women; some pregnant, some caring for children with Zika-related congenital conditions. This abundance of images of children and mothers affected by Zika is not surprising, as they are, in fact, the populations most seriously harmed by the virus. There is now enough evidence to infer that prenatal Zika virus infection can cause microcephaly and other brain anomalies in the developing fetus (Rasmussen et al 2016). Embedded in public health communiques and media coverage, these publicly available images are undoubtedly an important part of the narrative of the Zika epidemic; they provide a face and a human dimension to a risk often perceived as distant and abstract by residents of latitudes currently unaffected by the virus. In this sense, the images perform an important role; they humanize, contextualize, and help raise awareness of a serious disease that is expected to continue to spread (CDC, 2016). Regardless of the many ways in which these images can improve our understanding of how Zika is affecting the lives of people worldwide, and may eventually affect ours, we must exercise caution in our use of them. These images are not just representations of bodies, they are instances of a person’s life, and furthermore, often present facets of that life that are considered private to some extent, such as pregnancy and illness.

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Adult, male mosquitoes are inspected by an IAEA technician at the Agency’s Insect Pest Control Laboratory in Seibersdorf, Austria. Image source: Dean Calma / IAEA via Flickr.

While privacy is a central topic in bioethics, the kind of privacy at stake in this case may not fit neatly into bioethical definitions and guidelines. Forms of privacy relevant to bioethics include informational privacy, physical privacy, decisional privacy, proprietary privacy, and relational privacy (Beauchamp and Childress 2013). It is plausible to say that media representations of these mothers and children include most of these forms, but also other aspects that may fall outside of these definitions. A BBC News report on babies born with microcephaly attributed to in-utero Zika infection in Pernambuco, Brazil, not only shares private information such as details on the health and pregnancies of the featured mothers, but also allows us a very close look at their private lives; their homes, bedrooms, and even the intimate suffering caused by disease. Even if subjects have consented to the use of their likenesses and stories, is this an encroachment on privacy, and if so, one that would fall within the purview of bioethics?

In bioethics, discussions of privacy generally focus on situations involving patients or subjects in medical care or research settings. Beyond these settings, safeguards such as Institutional Review Board approval are in place for most other research done in an academic setting or for academic purposes, but the same does not apply to non-academic research, including journalistic investigation. While journalism has its own set of ethical principles and guidelines, these tend to be more flexible regarding notions of privacy; the sharing of information that might be considered private in a healthcare setting is allowed in the media under the freedom of press principles. A common protection available to subjects in both healthcare and media settings is informed consent; in both cases one of the main roles of informed consent is to protect subjects from harm, acting on the principle of respect for autonomy (Beauchamp and Childress, 2013). Considerations of autonomy and harm are central to ethical dilemmas in journalism, but they tend to be open to interpretation, arguably more so than in bioethics (Richards, 2009). Furthermore, this interpretation is influenced by where loyalties lie in each case; for healthcare practitioners and researchers, the patient or subject is the priority, while journalists have a prima facie duty to the public interest (Canadian Association of Journalists, Ethics Advisory Committee, 2014). Another issue with consent in this case is that while consent may change over time, it would be practically impossible to completely remove the availability of images and stories that have already been made public, especially with the growing use of the internet and digital communications. One can assume that even if the content is eventually removed from the digital sphere, the images and stories of these mothers and children can be downloaded, saved, and shared without limit.

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In Recife, Brazil, Minister Teresa Campello talks to residents of Recife, Brazil, as part of a Zika prevention campaign “Dia Nacional de Mobilização Zika Zero.” Image source: Ministério do Desenvolvimento Social e Combate à Fome on Flickr.

In this case, the insufficiency of consent is further complicated by the social location of people being portrayed. Although in theory privacy protections apply equally to all, privacy is a markedly gendered and raced concept. For example, since fertility and reproduction can be said to play a role in a nation’s sustainability, many governments see it as their business to legislate over women’s bodies, dictating if and how women have a right to make autonomous reproductive choices (Holloway, 2011). Notably, the majority of women portrayed by the media coverage of the Zika epidemic are poor women of color; part of the reason is simply due to the geographical location of the epidemic, as well as the fact that poor populations generally have access to less resources to prevent and treat disease. Populations whose medical care is attached to some aspect of identity, for instance age, gender, race, or ethnicity, and whose autonomy is diminished in relation to this identity are considered vulnerable (CIOMS, 2002; Holloway, 2011). In research and medical care, these individuals are subject to protections regulated at the international and national levels. While ethical guidelines in journalism also include special considerations for vulnerable subjects, definitions of vulnerability and how to manage it are often vague, and always weighed against the need to provide a public service (Richards, 2009). Usually, the only protection vulnerable subjects have access to is informed consent, which is of little use if their autonomy is already compromised. We must also consider that vulnerability goes beyond diminished autonomy due to one’s age, gender, or race; it also includes, for example, an increased exposure to social risks that can result in discrimination, loss of opportunity, and even violence. Zika-infected pregnant women portrayed by the media can find themselves under even greater public scrutiny, and may be denied access to options such as elective abortion and participation in research that could potentially help women in similar situations (Harris et al, 2016). But, this should not mean that we cannot access or share information about vulnerable subjects, it just means that as is often the case, consent is not enough, especially when this information is likely to be widely broadcasted.

Given the importance of these stories in shaping a public narrative of the Zika epidemic, and the risk of harming vulnerable subjects, bioethicists should take an active part in laying out guidelines for the sharing of this information. Some aspects to consider in these conversations are cultural assumptions about privacy, our purposes for sharing this information, and whether or not it is contextualized by a broader story—not simply a voyeuristic look into the suffering of others. Additionally, breadth of scope should generally be considered in order to assure that images and stories do not focus on one aspect of a broader problem. A more balanced coverage of the Zika epidemic should also focus on the stories of researchers, government officials, tourists, and others touched in some way by this crisis. Finally, the kinds of information outlets we are using should be of primary concern; information shared on the internet, a generally open and unregulated source, can widely expose intimate aspects of a person’s life, and cause harm beyond what we can imagine.

list-cropMonica List, DVM, MA, is a doctoral student in the Department of Philosophy at Michigan State University. She earned a veterinary medicine degree from the National University of Costa Rica in 2002, and an MA degree in bioethics, also from the National University, in 2011.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, June 2, 2016. With your participation, we hope to create discussions rich with insights from diverse perspectives.

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The Challenges of Global Commercial Surrogacy

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series. For more information, click here.

By Hannah Giunta

Recently, The Guardian has carried a series of articles on the issue of commercial surrogacy. No doubt the recent emphasis stems from high-profile cases in the UK and the U.S., particularly the case of a UK surrogate mother who was ordered to honor her surrogacy agreement with a gay couple after she changed her mind about relinquishing the child (see this article for more details). In her May 9th editorial, Catherine Bennett laments that relational breakdowns in UK informal surrogacy arrangements will only encourage couples to look elsewhere for surrogates, and there are many women in developing countries who are willing to enter into these agreements even when few regulations exist to protect them. Surrogacy brokers can control these vulnerable women and sometimes force them to stay in special housing units where their activities can be monitored continuously until delivery. Keeping the child is socially and financially prohibitive for the women, so the brokers can guarantee the baby is handed over with minimal drama.

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Image Description: a view of a pregnant person’s bare stomach covered in post-it notes that have names written on them. Source: Flickr Creative Commons.

Even if richer countries like the UK and U.S. harmonized their laws and permitted commercial surrogacy domestically (like some U.S. states already do), arrangements would still sometimes fall apart, and wealthy couples desperate for a child would be drawn to the assurance provided by surrogacy brokers. Making an admittedly ethically inexact analogy with prostitution, Bennett surmises that there may be things, particularly acts that dehumanize and commodify women’s bodies, that no one should be asked to do, even for money. While I sympathize with Bennett’s desire to protect vulnerable women from exploitation, I worry that trying to simply end surrogacy would serve only to drive it underground. After all, prohibiting prostitution certainly hasn’t ended the practice. On the other hand, regulations without a new framework for the practice would ameliorate some of the exploitation endemic in commercial surrogacy but would fail to fundamentally address just what is so problematic about these ventures. However, there may be a middle way. If we want to address the larger moral issue, we have to ask, “What should give us pause about commercial surrogacy in a world where people can accept money for many forms of physical labor often at egregiously low prices?”

To my mind, the dehumanizing and commodifying part of current surrogacy practices in developing countries is not the use of women’s bodies for what might be a distasteful purpose to some but the surrogate’s wholesale exclusion from the relational aspects of pregnancy and birth. Here I call pregnancy and birth inherently relational because they usually result in the founding of a family unit, whatever the unit might look like. To be sure, families are not always founded intentionally or under the best of circumstances, but I would argue that at some level all pregnancies cement relationships and promote family ties. A new child solidifies the understanding that certain adults are now bound together at least through their relationship with the child. And, there is something special about family ties. We help relatives through troubled times, and we remain loyal to family members even when they annoy or disappoint us. The extent of our connections changes with proximity, but we treat even distant relatives with some respect just because they are in our family. Family members aren’t like contractually obligated service providers, and family life is much messier than any commercial venture. Surrogates in developing countries usually remain unrecognized as even extended family members, and this lack of recognition is presented as a desirable outcome by commissioning couples and surrogacy brokers. Commercial surrogacy arrangements where prospective parents possibly supply the raw ingredients, sign a contract, and return for pick-up with the intention never to see the surrogate again require women to do fundamentally relational work without relational support or respect. Effectively, couples are saying, “You’re good enough to carry our child but not welcome as part of our family.” It’s this attitude that is unacceptable. We should be wary when people want to found a family while excluding a significant member from the picture entirely. Not to mention, surrogacy has an impact not just on the involved adults but sooner or later on the child who is deprived of a potentially significant relationship. The worry about commercial surrogacy then shouldn’t be based solely on the physical labor performed or risks undertaken. It should be informed by the inherently relational nature of pregnancy and birth. With the current vision of international surrogacy as a clean, strings-free way to have a child, we need to change how we look at the process. Only then will regulations truly help.

What might surrogacy look like if there were significant efforts to integrate the surrogate into the larger family unit and thereby restore relational ties? Obviously, every surrogacy arrangement would look different, but minimally, there would have to be avenues for the surrogate to remain in contact with the family after delivery. Provisions would likely look similar to those specified in open adoptions. These changes would impact couples seeking surrogacy arrangements, but family life isn’t exclusively about the needs of any two people. The surrogate’s desires and the child’s needs should factor just as heavily into the discussion. Acknowledging the unique and fundamental role surrogates play in families is the only way to insure their wombs are not merely leased for nine months. If children were like products, then such leasing might be acceptable. But, children are family members who deserve positive relationships with as many other family members as possible, and they share an undeniable relationship with their surrogate. After all, if the surrogate had not carried them for nine months and done real work on their behalf, they wouldn’t exist. Founding a family will always have to be like family life itself—messy but rewarding—and that dichotomy is something that rigid commercial contracts can’t easily accommodate. The only way to right the wrong is to realize that when a couple creates a child with a surrogate they are founding a family—one that includes the surrogate herself.

References

hannah-giunta-100Hannah Giunta is a sixth year DO-PhD student pursuing a PhD in Philosophy and Bioethics.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, June 4. With your participation, we hope to create discussions rich with insights from diverse perspectives.

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