We Need Healthier Schools, and Student Activists Are Stepping Up

Comments open through November 28

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

By Sean A. Valles, PhD

California just passed two laws that advance health in schools in ways that might not seem intuitive: pushing middle school and high school start times to after 8am, and banning school districts from “lunch shaming” that treats students differently based on whether they have unpaid school lunch debt. These laws are part of a collection of diverse efforts to make U.S. schools healthier places. The fact that some of these efforts have been led by students themselves is especially heartening.

Bioethics of school policies
The two new laws in California are worthy of attention in a bioethics blog because U.S. schools are, for many students and in many ways, unhealthy places. Not simply because they are crowded spaces infamous for spreading coughs and colds (and stress). For many students, they are also places of food insecurity, social stigma, or even fear of violence. Those problems also shed light on larger problems in society. Even as a child in Los Angeles, I grasped that the local high school having a metal detector at the door signified that something much bigger had gone horribly wrong in my community. Most student problems have their roots outside the school walls, but we can at least do our best to design schools to contend with the difficult realities of young people’s lives.

There is now compelling evidence that later start times for schools are better for adolescent health than early morning ones. As pointed out in one review of the research, adolescents’ bedtimes seem to be more or less independent of when school starts in the morning, partly due to biological clock rhythms changing during puberty. Students forced to begin school early in the morning suffer all of the resulting harms of insufficient sleep (most readers are surely aware that insufficient sleep is bad for physical and mental well-being). This change is surprising in part because the American Academy of Pediatrics has, with limited success until now, been pushing for later school start times, insisting that school start times should facilitate the 8.5-9.5 hours of sleep appropriate for adolescent biology. It will be a difficult schedule transition for some California schools and families/guardians to adjust to, but the health rationale remains powerful.

Stigmatizing and manipulating students are problems, not solutions
It is also encouraging to see California legislate against lunch shaming. Unless prohibited, U.S. schools have the freedom to intentionally or incidentally shame students for being unable to afford their lunch meals. They have done so by giving indebted students inferior meals, marking the students with wristbands or stamps, etc. This is a serious health matter because imposing a stigmatized status upon a child, or even just amplifying an existing one, is a harmful act. Research is quite clear that stigma (“the co-occurrence of labeling, stereotyping, separation, status loss, and discrimination in a context in which power is exercised”) is a powerful and pervasive cause of health injustices. Stigma stresses bodies, socially controls people, and excludes them from social opportunities and resources available to others. Being a child without enough money to pay for lunch is quite hard enough, without one’s school officials metaphorically painting a target on one’s back.

41893349131_fe20401ca8_c

Image description: Young person at the March for Our Lives protest, holding a placard painted with the words “AM I NEXT?” in red. Image source: Roger Jones/Public Domain.

The desirability of the California law gets clearer when one looks at a policy that goes in the opposite direction. In a widely-criticized lurch backwards, a newly-created policy in a New Jersey school district gives discretion to principals to ban students with lunch debt from participating in extracurricular activities. Which students? Under which circumstances? What goals are achieved by such exclusions? Certainly banning students from soccer practice or chess club doesn’t make money magically appear in their parents’ pockets. The policy is a setback, but I am encouraged by the backlash that gives a new sense of clarity to how remarkably regressive this policy is in light of the opposite trend.

Student advocacy should be welcomed
Most encouraging to me is the fact that students are advocating for themselves and the health of their schools. I am glad that the American Academy of Pediatrics and some California state legislators are advocating for healthier schools, but I have argued at length elsewhere that it is preferable to empower people advocate for themselves. And so students are. For instance, they have been at the forefront of a series of lobbying efforts (successful in Oregon and Utah) to get mental sick days recognized as legitimate reasons for missing school.

It is no coincidence that this push to create space for “mental health days” comes in the middle of a period of worsening mental health of young people in the U.S. Deaths from suicides just replaced deaths from homicides as the second leading cause of death among 15-19-year-olds (deaths from traffic accidents are down, but still exceed both). And homicides are also a target of student activism; after the Parkland school shooting, young people became the unexpected leaders of a new wave of gun control activism.

The late 2010s have been a time of disorienting rapid change, but I suspect that future historians will highlight one global social phenomenon: young people demanding a better world. The most prominent example is the rise of young climate change activists around the world—Greta Thunberg being the most famous—demanding action with a new sense of clarity and resolve. As I write this, Teen Vogue’s website teases an article with a link saying “Why Homeless Advocates Aren’t Happy With the 2020 Presidential Candidates” and an op-ed on radical labor organizing among nail salon workers.

Better health through better spaces
Even though lunch shaming, poor mental health, exhaustion and all sorts of other health problems still tragically afflict young people in schools, I am optimistic because it really does feel that the winds have shifted—thanks in large part to student activists, unhealthy schools are finally getting reforms they have long needed. As I argue at length in the book Philosophy of Population Health, health depends not just on whether we have good medical care, but also on whether the places where we live our everyday lives have been thoughtfully designed to support good health.

Sean Valles photo

Sean A. Valles, PhD, is an Associate Professor with an appointment in Lyman Briggs College and the Department of Philosophy at Michigan State University. His research spans a range of topics in the philosophy of population health, from the use of evidence in medical genetics to the roles played by race concepts in epidemiology. He is author of the 2018 book, Philosophy of Population Health: Philosophy for a New Public Health Era. He is also Director of the MSU Science and Society @ State Program, supporting interdisciplinary faculty collaborations that join the humanities, arts, and sciences.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, November 28, 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.

More Bioethics in the News from Dr. Valles: Recognizing Menstrual Supplies as Basic Health Necessities: The Bioethics of #FreePeriodsTrump’s Attempt to Reignite the Coal Industry Is Another Health Policy BlunderPolitics and the Other Lead Poisoning: The Public Health Ethics of Gun Violence; Climate Change and Medical Risk

Click through to view references

Posted in Bioethics in the News, Uncategorized | Tagged , , , , , , , , , , | 12 Comments

Article from Dr. Laura Cabrera in November ‘Bioethics’ issue

Laura Cabrera photoAn article by Center Assistant Professor Dr. Laura Cabrera has been published in the November 2019 issue of Bioethics. The article, “A human rights approach to low data reporting in clinical trials of psychiatric deep brain stimulation,” advocates for “the importance of reporting clinical trial data of invasive procedures in highly vulnerable populations, such as psychiatric DBS trials.”

Abstract: The reporting of clinical trial data is necessary not only for doctors to determine treatment efficacy, but also to explore new questions without unnecessarily repeating trials, and to protect patients and the public from dangers when data are withheld. This issue is particularly salient in those trials involving invasive neurosurgical interventions, such as deep brain stimulation (DBS), for ‘treatment refractory’ psychiatric disorders. Using the federal database ClinicalTrials.gov, it was discovered that out of the completed or unknown‐status trials related to psychiatric DBS up to November 2018, only two had submitted results to ClinicalTrials.gov. These results suggest that, despite federal requirements to report clinical trial data, reporting on psychiatric DBS trials is problematically minimal. It is argued that a human rights approach to this problem establishes a legal and ethical foundation for the need to report clinical trial results in this area.

The full text is available online via Wiley Online Library (MSU Library or other institutional access may be required to view this article).

Posted in Articles, Center News, Publications, Uncategorized | Tagged , , , , , ,

Dr. Cabrera presents at International Neuroscience Society annual meeting

Laura Cabrera photoLast month Center Assistant Professor Dr. Laura Cabrera presented at the International Neuroethics Society (INS) Annual Meeting in Chicago. The meeting theme, “Mapping Neuroethics: An Expanded Vision” resulted in a gathering of a truly diverse group of scholars, scientists, clinicians, and professionals dedicated to the responsible use of advances in brain science.

Dr. Cabrera participated in the panel “Incapable Patients and Psychiatric Neurosurgery: What do Law and Ethics Have to Say?”, discussing the regulatory and ethical landscape around psychiatric neurosurgery. Additionally, Dr. Cabrera had two posters discussing results from her NEURON collaboration with Dr. Judy Illes (University of British Columbia), and two posters discussing results from her NIH BRAIN Initiative grant on psychiatric electroceutical interventions. Undergraduate research assistants Emily Castillo and Marissa Cortright were there to present the posters discussing results from the developmental stage of the ongoing NIH BRAIN project. They are pictured below with the posters “Public Views About Treating Depression Across Four Treatment Modalities” and “Perceived Invasiveness of Psychiatric Electroceutical Interventions as Treatment for Clinical Depression.”

Marissa Cortright with poster at INS 2019

Marissa Cortright with the poster “Public Views About Treating Depression Across Four Treatment Modalities.” Photo courtesy of Emily Castillo.

Emily Castillo with poster at INS 2019

Emily Castillo with the poster “Perceived Invasiveness of Psychiatric Electroceutical Interventions as Treatment for Clinical Depression.” Photo courtesy of Emily Castillo.

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

Listen: Genes, Behavior, and the Brain

No Easy Answers in Bioethics logoNo Easy Answers in Bioethics Episode 17

We can look at an individual’s DNA and know what their hair color is, but what about their behavioral traits? This episode features Center for Ethics Assistant Professor Dr. Laura Cabrera, and Dr. Mark Reimers, Associate Professor in the Neuroscience Program in MSU’s College of Natural Science. Drawing from their expertise as neuroscience researchers, they discuss what we know about how our DNA affects our behavior—from IQ scores to mental illness. They also explore possible ethical issues that may arise in the near future related to the study of behavioral genetics and gene expression.

Ways to Listen

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.

Posted in Center News, Outreach, Podcasts, Uncategorized | Tagged , , , , , , , , , , , , ,

Dr. Fleck presents at 21st Annual ASBH Conference

Leonard Fleck photoCenter Acting Director and Professor Dr. Leonard Fleck recently attended and presented at the 21st American Society for Bioethics and Humanities Annual Conference, held in Pittsburgh, PA. Dr. Fleck participated in a session titled “Ageism in History, Moral Thought, and Healthcare Decisions,” presenting “Just Caring: In Defense of Fair Innings, Not Extra Innings, for the Elderly.”

Dr. Fleck has provided a summary of his presentation below.

A just and caring society has as its first obligation to assure access to needed and effective health care for all so that, if medically possible, all have an opportunity to achieve a normal life span (their fair innings). It is wrong to deny the elderly (over age 70) access at social cost to needed and effective health care simply because they are old or very old. But it is equally morally objectionable for the elderly to demand unlimited access at social cost to any medical intervention that offers them some opportunity (no matter how small) for some extended life or somewhat improved quality of life. Those are unjust demands by the elderly and cannot be rightly criticized for being ageist.

In the real world, the non-elderly do not wish to pay unlimited sums (payroll taxes) to underwrite the costs of the current generation of the elderly. But it is also the case that the current generation of the non-elderly do not wish to pay more in taxes to support the even greater health care needs of their own future possible elderly selves.

The clearest example I have of “pure” age-based rationing is one of the recommendations we made to the governor in the event of a pandemic in the vicinity of the “Spanish flu of 1918.” We said if there was a shortage of vents/ ICU beds or other such life-saving interventions, no one over age 70 would have access to those interventions. I would not want my grandkids or your grandkids to die so that I could live to my mid-80s or beyond.

There is a new version of a totally implantable artificial heart (TIAH), expected to be in clinical trials in early 2020. This would promise extra years of life to the 500,000 patients each year in the U.S. in late-stage heart failure. The cost per person would be more than $400,000. Many of these patients will be in their 80s or beyond. If all 500,000 patients had an equal just claim to a TIAH, that would add $200 billion per year to the cost of health care. Could we agree through public deliberation no one over age 80 would be eligible for this heart at social expense?

Iibrutinib is for Chronic Lymphocytic Leukemia at a cost of $156,000 per person per year. These patients are mostly older; median onset at age 71. Ibrutinib will fail some at year 2, year 4, year 6, year 8. Then patients either die or (today) have the option of CAR T-cell immunotherapy at a front-end cost of $475,000. (And there are hundreds of thousands of dollars in additional costs per patient for those who experience cytokine release syndrome). 30% of these patients given CAR T-cell therapy will die in less than a year. If we had a biomarker that could identify those patients before the fact, would it be just to still allow access to CAR T-cell therapy if a patient were less than 75, but deny it to patients over age 75 who were identified with 90% probability of being in that 30% group? These are challenges for democratic deliberation.

Posted in Bioethics Events, Center News, Uncategorized | Tagged , , , , , , , , , ,

Biohacking: How a DIY Approach to Biology Can Shape Our Future

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

By Jennifer Carter-Johnson, PhD, JD

In 2017, Josiah Zayner live-streamed himself injecting a gene therapy construct designed to edit the DNA in his muscle cells to give him bigger muscles. This moment was noteworthy because the gene therapy construct had been created entirely by Zayner in his garage laboratory. Such work is called biohacking or DIY biology.

These actions do not come without consequences. He has recently been investigated for practicing medicine without a license, and the state of California recently passed a law to require all such kits to include a notice “stating that the kit is not for self-administration.”

What is Biohacking?
Zayner is not alone; in fact, the biohacking movement is growing across the country. Zayner also sells kits that allow other biohackers to experiment with DNA and gene editing from his website, The Odin. There are also laboratories across the country that allow interested people to have space to conduct biology experiments without having to build a home laboratory.

Biohacking at its core is bringing science out of the laboratories of academia and industry and into grasp of citizen scientists. But the exact definition of what is included in biohacking differs among people. Biohacking includes a diverse variety of science experiments such as tracking of sleep and diet, under-skin implantation of computer chips and other technology, ingestion of “smart drugs” and sub-clinical levels of LSD, transplantation of gut and skin microbiomes, infusion of “young blood” to reverse aging, and genetic modification of bacteria, yeast and human cells.

30409447422_ea166bd409_k

Image description: an equipment setup called a “makerbay” in a Hong Kong biohacking makerspace. Image source: Athena Lam/Flickr Creative Commons.

Each type of biohacking brings its own risks and rewards. This blog post will focus on genetic modification of cells using new gene editing techniques such as CRISPR. Advances in gene editing technology over the past five years have made accessible science that was once confined to expensive, high-technology laboratories. For a broader look at CRISPR and gene editing by researchers and bio-hackers, Netflix has a new documentary series, Unnatural Selection.

Benefits of Biohacking
First and foremost, the benefit of biohacking is access to science. Not everyone can afford an advanced degree biology or wants to work full time in a laboratory. Biohacking democratizes science for people who have a passion for learning about the world and how it works. It also has the potential to increase access to medicine. One endeavor, the Open Insulin Project, attempts to find a cheaper and intellectual property-free way to produce and distribute insulin to make it available to people who have a hard time affording the drug.

In addition to access, biohacking communities are also hubs of outreach and education. The laboratory spaces often hold classes and meeting spaces for like-minded individuals to network. There are competitions that bring together student and citizen scientist teams who work on using synthetic biology to create biological solutions to local and international problems.

Biohackers are taking these responsibilities seriously as a whole. The community has even developed its own code of ethics emphasizing open access, transparency, education, safety, environment, and peaceful purposes.

Risks of Biohacking
Although biohacking has many benefits, there are risks of which the world and individual citizen scientists should be aware. Perhaps the largest potential threats are the lack of education and regulation within the biohacking community.

P1010987

Image description: two people are gathered at a table containing various types of scientific equipment. Image source: Martin Dittus/Flickr Creative Commons.

While Josiah Zaynor holds a PhD in biopohysics, not all biohackers are so well educated. Community laboratories help with classes and mutual support, but home-based biohackers must rely on their own knowledge and understanding, though websites are available for questions and discussions. Education and outreach to biohackers is also the strategy of the FBI in recent years, though many biohackers are reticent to accept its help. Additionally, while the community does have a code of ethics, there is little formal ethics training in concepts such as informed consent or using animals in research.

Due to the open definition and decentralized structure of biohacking, regulation is almost impossible. Lack of regulation leaves laboratory safety in the hands of the biohackers. As with any scientific endeavor involving genetic engineering, accidents can occur that could lead to the release of environmentally destructive organisms. Biohackers injecting themselves or others could cause any number of infections or adverse reactions. Additionally, the risk of the development of dangerous or ineffective gene therapies and other products by biohackers has led the Food and Drug Administration to issue warnings to the public about untested products. This risk is especially relevant in an era of rising drug costs.

Other dangers, such as specific threats to biosecurity, are real but attenuated. While it is possible biohackers could genetically engineer a bacteria or virus, there are far easier ways for a small-scale terrorist group to attack.

Future of Biohacking
Highly technical equipment and processes are becoming more accessible. People are looking for ways to take control of their health and provide access to medicines. Curiosity about the natural world should be encouraged.

The risks are real, but we can deal with them by working together. By having community leaders willing to confront the risks and help develop community norms, we can shape the application of biohacker energies. Zayner himself has realized that other biohackers may seek to emulate his self-experimentation and get hurt.

In the end, biohacking is here to stay.

Jennifer Carter-Johnson photo

Jennifer Carter-Johnson, PhD, JD, is an Associate Professor of Law in the College of Law at Michigan State University. Dr. Carter-Johnson is a member of the Michigan State Bar. She is registered to practice before the U.S. Patent and Trademark Office.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, November 14, 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.

More Bioethics in the News from Dr. Carter-Johnson: Web of Interests Surrounding Medicines Makes Patient Access Increasingly DifficultHumanity in the Age of Genetic ModificationDefining The Spectrum of “Normal”: What is a Disease?Dawn of False Hope: Spread of “Right To Try” Laws across the U.S.

Click through to view references

Posted in Bioethics in the News, Uncategorized | Tagged , , , , , , , , , | 24 Comments

How do our loved ones make life-and-death medical decisions for us?

Speaking for the Dying: Life-and-Death Decisions in Intensive Care

Susan P Shapiro photo

Susan P. Shapiro, PhD

Event Flyer

Seven in ten older Americans who require medical decisions in the final days of life lack capacity to make them. For many of us, our biggest life-and-death decisions—literally—will therefore be made by someone else. But how will they decide for us? Despite their critical role in choreographing the end of another’s life, we know remarkably little. Susan Shapiro’s new book, Speaking for the Dying, fills that void. Drawing on daily observations over more than two years in two intensive care units in a diverse urban hospital, Shapiro will share how loved ones actually speak for the dying, the criteria they use in medical decisions on behalf of patients without capacity, and the limited role of advance directives in this process.

November 13 iconJoin us for Dr. Shapiro’s lecture on Wednesday, November 13, 2019 from noon until 1 pm in person or online.

Susan P. Shapiro is a sociologist and research professor at the American Bar Foundation. She works at the intersection of law and relationships of trust in which one acts of behalf of a vulnerable other—for example, medical decision making for patients without capacity. Her publications examine the role of law at life’s end, ethics, agency theory, conflict of interest, the professions, securities fraud and regulation, and white-collar crime. In addition to scores of articles, she is the author of Speaking for the Dying: Life-and-Death Decisions in Intensive Care (U of Chicago Press), Tangled Loyalties: Conflict of Interest in Legal Practice (U of Michigan Press) and Wayward Capitalists: Target of the Securities and Exchange Commission (Yale U Press).

In person: This lecture will take place in C102 Patenge Room in East Fee Hall on MSU’s East Lansing campus. Feel free to bring your lunch! Beverages and light snacks will be provided.

Online: Here are some instructions for your first time joining the webinar, or if you have attended or viewed them before, go to the meeting!

Can’t make it? All webinars are recorded! Visit our archive of recorded lecturesTo receive reminders before each webinar, please subscribe to our mailing list.

Posted in Bioethics Events, Brownbag & Webinar Series, Center News, Outreach, Uncategorized | Tagged , , , , , , , , , , ,