Pseudoscience and Measles in Minnesota

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

By Hannah C. Giunta, DO, PhD, MPH

A recent measles outbreak in the Minneapolis-St. Paul, MN metro area is all over the news. More than thirty children have been treated at local hospitals, and at least 50 measles cases have been confirmed. The local Somali immigrant community has been hardest hit in large part due to their low vaccination rates. Commentators have demanded a variety of measures to control the vaccine-preventable disease, including enhanced border security. However, there has been less coverage of the outbreak as evidence of systemic social injustice.

Indeed, no matter what ones views are on compulsory vaccination, Somali parents’ vaccine refusal is not a case of informed, empowered parental choice but one of disadvantage and exploitation. The Somali immigrant community has been targeted by anti-vaccine activists spreading scientifically suspect information. Activists have taken advantage of an as yet unexplained increased rate of severe autism (but not autism in general) in the Somali community, encouraging parents not to vaccinate while spreading long debunked claims about the link between vaccination and autism. Realizing that internet rumors were not effective, activists have taken to personally visiting families and warning them about the dangers of vaccination. Yet, there is a real temptation to place some of the blame for the epidemic on Somali parents. Even commentators who rightly place blame on the anti-vaccine activists and declare the situation quite literally “a natural experiment” do not take the extra step of calling activists what they really are: gamblers and fraudulent pseudo-scientists willing to bet on the lives of disadvantaged children. This is not a case about free speech or poor parental decision-making; rather, it is a case of advocates conducting a so-called “natural” experiment where they stand to possibly gain the benefits (i.e. possible support for their cause) without taking on or acknowledging any of the risks faced by their subject-victims. The activists are guilty not just of being ill-informed and having dubious goals but also of perpetrating a larger social injustice.

While people certainly have the right to free speech and we all have a responsibility to evaluate the information presented to us, anti-vaccine advocates in this case chose to target a vulnerable population and to take advantage of individuals’ lack of empowerment. Of course, they did not set out to conduct a classic scientific experiment, but they are certainly still guilty of participating in a type of experiment. Some might say that the activists were just trying to help Somali families because they sincerely believe in a link between autism and vaccination. Others would argue that these individuals are not qualified scientists and were not performing research. But, the activists’ project was more devious than misinformation. The activists sought to target a minority community, take advantage of a medical puzzle, keep community members in the dark about their true objectives, and to recruit participants into a risky gamble where “benefits” primarily accrue to the activists themselves. After all, if the activists could point to any decline in the autism rate (regardless of causation) or show the public that vaccine-preventable infections are simple childhood illnesses from which children recover without incident, they would have more “data” to support their cause. The very fact that parents believed the activists likely lent more credibility to the anti-vaccine crusade in populist minds. If enough people believe the message, surely there must be something to it?

13627881194_d283b73e57_k

Image description: a baby is in the hospital with measles in the Philippines. Image source: CDC Global/Flickr Creative Commons

The social injustice implications of a pseudo-research paradigm come into focus when we consider three major aspects of the case in question. First, the activists exploited their own relative privilege by providing biased information. There is no way that individuals engaged with the anti-vaccine campaign are unaware of vaccine-preventable diseases and the risks they present. They simply choose not to focus on those risks. They so strongly support their own hypothesis that they believe it to be true despite evidence to the contrary, much like a researcher might believe that nothing could possibly go wrong in an experiment. Anti-vaccine activists usually have access to many sources of information and thereby a certain degree of epistemic privilege. They have socioeconomic resources to travel to ethnic enclaves and meet with Somali families. On the other hand, the Somali community in Minnesota continues to struggle with poverty, unemployment, and related social ills. Somali children are already at-risk for poorer health outcomes, but the activists did not consider this relative health disadvantage.

Secondly, the activists maximized their own benefits while placing all of the burdens on the Somali children. The segregation of poor Somali immigrants into certain ethnic enclaves virtually insures that children, including the activists’ children, outside these neighborhoods face much less risk of illness. Should there be a serious outbreak, Somali children would bear the burden, not the activists’ children. The Somali community would also be blamed for not vaccinating their children, absolving the activists’ of responsibility through a leveraging of their privileged social position.

Lastly, even with obvious evidence that the Somali community is suffering a measles outbreak, activists have failed to reach out and attempt to retract their message. Their pseudoscientific project continues unabated. They cloak themselves in the language of science while allowing a natural experiment to run wild and harm innocent children. Clearly, they believe their agenda and hypothesis about autism causation are more important than the lives of innocent children. Measles does kill, and over 30% of children will experience one or more complications, including diarrhea and dehydration, pneumonia, and encephalitis. Perhaps, if anti-vaccine crusaders wish to engage in pseudoscience, we should hold them to the standards and responsibilities of real medical scientists, including the wrongful death of any children who succumb and the continuing expense of measles-related complications. You can’t yell “fire” in a crowded room if there really isn’t a fire, and activists have crossed a line and are doing just that. We, in the name of equitable health outcomes, need to remind activists that words do matter and their experiment has failed.

hannah-giunta-2017-cropHannah C. Giunta is a May 2017 graduate of the Michigan State University DO-PhD program. She received her MPH in May 2015 and her philosophy PhD in May 2016. Dr. Giunta is an incoming Mayo Clinic Pediatrics Resident.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, June 1, 2017. 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.

Click through to view references

Posted in Bioethics in the News, Uncategorized | Tagged , , , , , , , , , | Leave a comment

Chapter from Dr. Fleck published in ‘Cancer Biomarkers: Ethics, Economics and Society’

Leonard Fleck photoA chapter from Center Professor Dr. Leonard Fleck has been published in the book Cancer Biomarkers: Ethics, Economics and Society, published by Megaloceros Press. Dr. Fleck’s chapter is titled “Just Caring: Precision Medicine, Cancer Biomarkers and Ethical Ambiguity.” The book is edited by Anne Blanchard and Roger Strand.

From the Amazon description:

Cancer care is undergoing a shift from a ‘one-size-fits all’ approach to more personalised medicine. One way of personalising cancer treatments is through biomarkers: molecules or biochemical changes found in the patient’s tissues and body fluids. This book reflects upon the promise of cancer biomarkers and asks questions such as: How may the complexity of cancer biology impede the robustness of biomarkers in the clinic? How should one draw the line between the various sub-groups of patients for personalised treatment? How can one evaluate the cost-effectiveness and fairness of personalised cancer treatments? By bringing together authors from the fields of science and technology studies, medical ethics and philosophy, health economics and oncology, the book aims to give a critical yet accessible overview of some of the key social, ethical and economic issues that surround cancer biomarkers. “The book should be required reading for oncologists, medical students, graduate students and especially for those who make policy decisions regarding the use and reimbursement of cancer biomarkers.” – Bruce Zetter, Charles Nowiszewski Professor of Cancer Biology in the Department of Surgery, Harvard Medical School

Posted in Book Chapters, Publications, Uncategorized | Tagged , , , , , ,

Dr. Tomlinson presents at International Society for Biological and Environmental Repositories Annual Meeting

tomlinson-crop-2016Center Director and Professor Dr. Tom Tomlinson presented a talk on the “Effect of Deliberation on Attitudes Toward Biobank Consent Options” at the International Society for Biological and Environmental Repositories (ISBER) Annual Meeting held in Toronto on May 9-12. The talk presented findings from democratic deliberations held in 2015 as part of a larger NIH-funded project investigating the effect that people’s moral, cultural or social concerns (“non-welfare interests” or NWI) about possible future research uses of donated specimens and data might have on their willingness to donate and on their preferences regarding biobank consents.

The presentation focused on what effect the deliberations in themselves had on preferences among biobank consent options, as opposed to any effects attributable to the educational materials provided during the deliberation day. The study design made it possible to separate these, since participants were randomized into the deliberation group, an education-only group that received paper copies of the presentations with notes, and a control group that received no information. A logistic regression analysis revealed that compared to the education and control groups, the deliberators moved away from a blanket consent to any and all future research uses toward consents that in a variety of ways acknowledged or accommodated donors’ NWIs. These findings supported recommendations for increased transparency, stronger donor participation in biobank governance, and greater efforts to identify concerns among biobanks’ donor communities.

Posted in Center News, International, Research, Uncategorized | Tagged , , , , ,

Dr. Cabrera presents at 1st Congress for Ethics and Neurosurgery

cabrera-crop-2015Center Assistant Professor Dr. Laura Cabrera recently traveled to Stockholm, Sweden to attend and present at the 1st Congress for Ethics and Neurosurgery, held May 4-6. The congress was arranged by the Ethicolegal Committee of the European Association of Neurosurgical Societies (EANS), the Ethics Committee of the World Federation of Neurosurgical Societies (WFNS), the Department of Neurosurgery at Karolinska University Hospital, and the Swedish Society of Medicine.

Dr. Cabrera presented a talk entitled “Media Coverage & Public Perception on Psychiatric Neurosurgery.” The event brought participants from around the world, including Japan, Turkey, Canada, USA, Germany, Switzerland, and the Netherlands. The talks touched on a number of important ethical considerations in neurosurgery, such as innovation and conflicts of interest, value of life, the use of stem-cells in neurological disease, concurrent surgery, and professional responsibility. “Everyone left looking forward to the next edition of the congress,” said Dr. Cabrera.

Posted in Center News, International, Research, Uncategorized | Tagged , , , , , ,

Dr. Stahl attends Galveston Brain Injury Conference

stahl-crop-2015Center Assistant Professor Dr. Devan Stahl attended the Galveston Brain Injury Conference on May 4-5 in Galveston, Texas. She was part of a work group that considered how to handle requests to withdraw/withhold life-sustaining treatments from patients in minimally conscious states.

The group was divided into three tracks which considered the topic from the vantage points of the law, ethics, and clinicians. Dr. Stahl was part of the ethics group. The task of this group was to consider the most ethically relevant debates which may arise when considering whether or not to honor a request (either by a patient or surrogate) to end life-sustaining treatments. The group considered questions, such as diagnostic and prognostic uncertainty, the abilities of persons in minimally conscious states, well-being and quality of life, and the proper use of advance directives and surrogate decision making. The group intends to publish a series of articles which will describe the ethical challenges which arise in treating patients in minimally conscious states. Ultimately, the group hopes to enhance discussions about when it is appropriate to continue or withhold life-sustaining treatments for persons in minimally conscious states.

Posted in Center News, Uncategorized | Tagged , , ,

Bioethics for Breakfast: Treating Pain Without Feeding Addiction: Is There a Goldilocks Solution?

bioethics-for-breakfastForrest Pasanski, JD, and Steven Roskos, MD, presented at the Bioethics for Breakfast event on April 20, 2017, offering perspective and insight on the topic, “Treating Pain Without Feeding Addiction: Is There a Goldilocks Solution?”

In August 2016 the Michigan Department of Licensing and Regulatory Affairs (LARA) created a permanent Drug Monitoring Section to stem the state’s prescription drug abuse epidemic, tightening its monitoring of physicians’ opioid prescribing. Certainly as the ones who write the prescriptions, physicians should help remedy the prescription opioid epidemic. But they also have a responsibility to effectively manage the pain their patients experience. In striving to meet one of these responsibilities, will they fail to meet the other? Or is there a place in the middle that is ethically “just right?” How might they optimally collaborate with the state to ensure the best interests of its citizens?

Mr. Pasanski discussed the scope of the opioid epidemic in Michigan as well and the state’s response, highlighting efforts to identify, investigate, and take substantial licensing actions against overprescribers. Dr. Roskos offered a physician perspective, touching on trust in the doctor-patient relationship and how state regulations may create tension within that relationship.

Forrest Pasanski, JD
Forrest Pasanski, JD, is Regulation Section Manager, Drug Monitoring Section for State of Michigan, Michigan Department of Licensing and Regulatory Affairs, Bureau of Professional Licensing where he oversees the Michigan Automated Prescription System (MAPS) and staff who identify, investigate, and bring administrative actions against health professionals who overprescribe, overdispense or divert controlled substances. He studied philosophy and political science at Grand Valley State University and graduated from the Michigan State University College of Law.

Steven Roskos, MD
Steven E. Roskos, MD, is an associate professor in the Department of Family Medicine in the Michigan State University College of Human Medicine, where he also serves as associate chair for academic affairs. He received his MD from Temple University School of Medicine, Philadelphia, Pennsylvania and completed a family medicine residency at Lancaster General Hospital, Lancaster, Pennsylvania. Dr. Roskos practiced in southern Appalachia for seven years, then taught at the University of Tennessee before completing a fellowship in academic medicine at Michigan State and then joining the faculty. He has a clinical interest in treating patients with chronic pain and served on the Michigan Advisory Committee on Pain and Symptom Management for five years.

About Bioethics for Breakfast:
In 2010, Hall, Render, Killian, Heath & Lyman invited the Center for Ethics to partner on a bioethics seminar series. The Center for Ethics and Hall Render invite guests from the health professions, religious and community organizations, political circles, and the academy to engage in lively discussions of topics spanning the worlds of bioethics, health law, business, and policy. For each event, the Center selects from a wide range of controversial issues and provides two presenters either from our own faculty or invited guests, who offer distinctive, and sometimes clashing, perspectives. Those brief presentations are followed by a moderated open discussion.
Posted in Bioethics Events, Friends of the Center, Outreach, Uncategorized | Tagged , , , , , , , , ,

Trump’s Attempt to Reignite the Coal Industry Is Another Health Policy Blunder

This post is a part of our Bioethics in the News seriesBioethics-in-the-News-logo

By Sean A. Valles, PhD

The recently abandoned effort to pass the American Health Care Act (AHCA) was a massive blunder for the Trump administration, failing in its effort to “repeal and replace” Obama’s signature Affordable Care Act, despite Republican control over the House, Senate, and the White House. Less attention has been given to the Trump administration’s second major health policy reform. On March 28, Trump signed an executive order initiating a reversal of Obama-era clean energy plans and seeking “an end to the war on coal.” It was presented as an economic policy reform and an energy policy reform, but it is also a health policy reform since it will have drastic effects on U.S. health.

A short blog entry does not allow me to do justice to the incredible range of ways that coal power plants harm our health. For those interested, Epstein et al. (2011) survey the issue: Coal is one of the leading sources of mercury emissions in the U.S., with horrific effects such as neurological damage in developing fetuses. Meanwhile, much like breathing cigarette smoke, the mix of particles emitted from coal power plants causes increased rates of heart disease, asthma, bronchitis and a host of other diseases.

1024px-Detroit_Edison_Monroe_Power_Plant

Image description: a photo of the Detroit Edison Monroe Power Plant. Image source: Wikipedia

Obama’s Clean Power Plan, already delayed by legal challenges, was designed to hasten the process of replacing U.S. coal power with other energy sources (natural gas, wind, etc.). That replacement process had already been underway because of old-fashioned capitalist market forces. Natural gas recently surpassed coal in U.S. power plants because natural gas is getting cheaper, and renewable sources like wind power are also cutting into the coal market. Meanwhile, manual laborers across the country are finding themselves displaced by new technologies, so even a stable coal industry would offer a diminishing number of coal mining jobs.

The Clean Power Plan was projected, by 2030, to save 1,500-3,600 people from dying prematurely, prevent “90,000 asthma attacks in children,” and prevent “300,000 missed school and work days” (among other benefits). Coal is already struggling to economically compete with other fuel sources, but is even more expensive than it looks if one factors in the harmful side effects it brings into our world: “Accounting for the damages conservatively doubles to triples the price of electricity from coal per [kilowatt hour] generated.”

It is telling that the economists who have defended Trump’s executive order avoid addressing the health data above. Stephen Moore and Nicolas Loris both insist that coal power has gotten much cleaner. Neither of them acknowledges how much harm coal still does, nor how much death and illness the Clean Power Plan would have averted. Loris tries to change the subject, claiming that the Clean Power Plan was really about carbon emissions and climate change, not “pollutants known to harm human health and the environment”. But, climate change causes health harms too, such as the (worsening) heat waves that aggravate cardiovascular and respiratory diseases (see my previous post for Bioethics in the News).

We do not need to choose between caring about health vs. caring about coal industry employees whose jobs are at risk; we should do both. The U.S. safety net leaves much to be desired, but it at least offers: job retraining programs, coordinated by the Department of Labor; access to temporary housing for those who lose their homes, coordinated by the Department of Housing and Urban Development; food assistance for the families that will go hungry, provided by the Department of Agriculture. But… Trump plans to drastically cut the budgets of all of those agencies. And, as if to remove all doubt that his declarations of concern for coal workers are hollow, he specifically wants to eliminate the two federal agencies tasked with improving the economy in struggling coal-producing regions: the Appalachian Regional Commission and the U.S. Economic Development Administration.

We are at a tipping point in U.S. health. The most recent CDC data show that our national life expectancy is actually decreasing, while other countries’ expectancies are rising. Meanwhile, new data on the strengths and limitations of healthcare in the U.S. show us that the benefits of health insurance coverage are ethically essential, but frustratingly limited in their power. Insurance coverage protects people from getting unfairly trapped in medical debt after an unexpected illness, but just having access to doctors and medicines doesn’t automatically make people healthier.

Our health is the cumulative effect of our everyday lives: the food we eat, the air we breathe and so on. It is unethically deceptive and cruel for the Trump administration to advertise dubious economic benefits of reviving the coal industry while there is an abundance of evidence that doing so will cause unethical harms to the millions who will be increasingly left to breathe more soot and eat more mercury. As many of my neighbors in the Great Lakes region already know, mercury deposits from coal have left many of our local fish too contaminated to eat more than occasionally. Adding insult to injury, Trump wants to eliminate the Great Lakes Restoration Initiative that is now working to decontaminate the lakes (a rare program with bipartisan political support at the local and national levels).

Trump earned plenty of criticism for bungling his first major legislative effort, the AHCA healthcare reform bill. The bill infamously tried to slash Medicaid spending by $839 billion over the next decade, the safety net program which—among many other benefits—“covers the costs of nearly half of all births in the United States.” (Note: some rumors are true; yes, the U.S. infant mortality rate is more than double the rate in Sweden and, yes, Cuba is also beating us by a healthy margin). Even his own party refused to rally behind the bill. Trump’s second health policy is his effort to reignite the coal industry with an executive order. But, the U.S. remains a representative democracy and your local legislators have the power to step in and, well, legislate. By all means, tell them what you think of Trump’s second health reform policy.

Sean Valles photoSean A. Valles, PhD, is an Associate Professor in the Lyman Briggs College and Department of Philosophy at Michigan State University. He is a philosopher specializing in ethical and evidentiary issues in contemporary population health sciences.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, May 11, 2017. 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 from Dr. Valles: Climate Change and Medical RiskPolitics and the Other Lead Poisoning: The Public Health Ethics of Gun Violence

Click through to view references

Posted in Bioethics in the News, Uncategorized | Tagged , , , , , , , | 1 Comment