In person, people with disabilities often experience microaggressions – comments or subtle insults based on stereotypes – but similar interactions, as well as new types of microaggressions, play out online as well.
A new study by researchers at Cornell and Michigan State University finds that those constant online slights add up. Interviews revealed that microaggressions affect their self-esteem and change how people with disabilities use social media. Ideally, digital tools will one day reduce the burden for marginalized users, but due to their subtlety, microaggressions can be hard for algorithms to detect.
“This paper brings a new perspective on how social interactions shape what equitable access means online and in the digital world,” said Sharon Heung, a doctoral student in information science. Heung presented the study, “Nothing Micro About It: Examining Ableist Microaggressions on Social Media,” Oct. 26 at ASSETS 2022, the Association for Computing Machinery SIGACCESS Conference on Computers and Accessibility.
Previously, little was known about online microaggressions. “If you look at the discourse around harms emanating from social media use by communities that are vulnerable, there is almost no work that focuses on people with disabilities,” said co-author Aditya Vashistha, assistant professor of information science in the Cornell Ann S. Bowers College of Computing and Information Science. “It’s surprising because about one in seven people in the world has a disability.”
When microaggressions occur in live settings, they are often ephemeral, with few bystanders. In contrast, “when they happen on social media platforms, it’s happening in front of a large audience – the scale is completely different,” said Vashistha, “and then they live on, for people to see forever.”
Additionally, social media platforms can amplify microaggressions, potentially spreading misinformation. “Online microaggressions have the ability to shape the understandings of disability for a lot of people who are not even involved in the situation,” said co-author Megh Marathe, assistant professor of media, information, bioethics, and social justice at Michigan State. “We’re very concerned about how it’s shaping the way the broader audience thinks about disability and disabled people.”
Heung and co-author Mahika Phutane, a doctoral student in computer science, interviewed 20 volunteers who self-identified as having various disabilities, and who were active on social media platforms. They asked the participants to describe subtle discrimination and microaggressions they had experienced, and the impact on their lives.
Patronizing comments like, “You’re so inspiring,” were the most common, along with infantilizing posts, like “Oh, you live by yourself?” People also asked inappropriate questions about users’ personal lives and made assumptions about what the person could do or wear based on their disability. Some users were told they were lying about their disability, or that they didn’t have one, especially if that disability was invisible, such as a mental health condition.
The researchers categorized the responses into 12 types of microaggressions. Most fit into categories previously recognized in offline interactions, but two were unique to social media. The first was “ghosting,” or ignored posts. The second was ways that the platform was inaccessible for people with various disabilities. For example, some users said they felt unwelcome when people did not add alt text to photos or used text colors they couldn’t discern. One person with dwarfism said her posts were continually removed because she kept getting flagged as a minor.
After experiencing a microaggression, users had to make the tough choice of how to respond. Regardless of whether they ignored the comment, reported it, or used the opportunity to educate the other person, participants said it took an emotional toll and damaged their self esteem. Many took breaks from social media or limited the information they shared online to protect themselves.
“Addressing this problem is really hard,” said Phutane. “Social media is driven to promote engagement, right? If they educate the perpetrator, then that original post will just get more and more promoted.”
Most social media platforms already have moderation tools, but reporting systems are sometimes flawed, lack transparency, and can misidentify harassment. The participants proposed that platforms should automatically detect and delete microaggressions, or a bot could pop up with information about disabilities.
However, microaggressions can be hard for automated systems to detect. Unlike hate speech, where algorithms can search for specific words, microaggressions are more nuanced and context-dependent.
Once the scope and types of microaggressions experienced by people from various marginalized groups are better understood, the researchers think tools can be developed to limit the burden of dealing with them. These issues are important to address, especially with the potential expansion of virtual reality and the “metaverse.”
“We need to be especially vigilant and conscious of how these real-world interactions get transferred over to online settings,” said co-author Shiri Azenkot, associate professor of information science at the Jacobs Technion-Cornell Institute at Cornell Tech and Cornell Bowers CIS. “It’s not just social media interactions – we’re also going to see more interactions in virtual spaces.”
This work was partially supported by the National Science Foundation Graduate Research Fellowship and the University of California President’s Postdoctoral Fellowship.
Patricia Waldron is a writer for the Cornell Ann S. Bowers College of Computing and Information Science.
What are we willing to accept as limits on access to very expensive marginally beneficial healthcare in our society?
Center Professor Leonard M. Fleck’s latest book, Precision Medicine and Distributive Justice: Wicked Problems for Democratic Deliberation, is now available from Oxford University Press. Fleck’s work as a philosopher and medical ethicist has focused on health care policy, and the role of community dialogue in addressing controversial issues of ethics and public policy related to emerging genetic technologies.
In an interview about this book, Fleck spoke of beginning democratic deliberation work around 1980 as part of a research project regarding changes to the Medicare program. He described the importance of involving members of the community in conversations about what values and considerations should shape the kinds of limits they would be willing to live with in terms of accessing needed healthcare. That project, centered in an Indiana community, shaped his work moving forward. The interview that follows explores the importance of democratic deliberation regarding the use of targeted cancer therapies.
The following interview has been edited for length and clarity.
Book cover, copyright Oxford University Press.
Who is the ideal audience of this book?
The ideal audience would be a broad segment of the public that needs to be aware of the kinds of challenges, the ethical and public policy challenges, that are associated with precision medicine. Its high cost and its marginal benefit.
How would you broadly define precision medicine?
Typically, precision medicine is defined as providing the right drug at the right time and the right dose for the right medical problem. Right now, mostly what we’re talking about is cancer, that is, metastatic cancer. What we’re talking about are the molecular features of a metastatic cancer that a particular individual has. The drugs that are used to attack that cancer are drugs that are designed for the very, very, very specific molecular features of a particular cancer. Some of those features get to be defined in really sharp terms. Researchers and physicians no longer talk about a stomach cancer or a lung cancer—I mean they they’ll use those terms, but the recognition is that the nature of the cancer, in terms of what we’re going to try to do about it from a therapeutic perspective, that’s going to be determined by the molecular signature of that cancer.
What is democratic deliberation, and why is it important? How does it apply to this topic of precision medicine and healthcare justice?
I always start off with what I call the “Just Caring” problem. What does it mean to be a just and caring society when we have only limited resources—money—to meet virtually unlimited healthcare needs? And that’s a very, very broad problem that applies to all of healthcare, certainly in the United States today. With regard to cancer, the issue is that these targeted cancer therapies, and the so-called immunotherapies which are among the targeted cancer therapies, are extraordinarily costly. They typically apply to relatively small groups of patients, measurable in a few thousand rather than one hundred thousand. For the vast majority of these patients, receiving one of these very expensive drugs is only going to yield extra months of life, if that, as opposed to a lot of extra years.
I’ve spent 50 years of my life thinking about this issue. And it’s only grown and become more complex over those 50 years, because of all the emerging life prolonging medical technologies that have come to be.
Leonard M. Fleck, PhD
So, if we had a $100,000 drug and this was going to give somebody three extra years of life, my guess is that most of us, democratic deliberators charged with determining how to spend our money on a whole range of healthcare interventions, including, of course, cancer, would say it’s a lot of money, but if we’re giving somebody three extra years, we ought to do that. And we ought to do that, we might say, because we think about, what are we spending now for purposes of giving a patient with HIV an extra year of life? A patient on a four-drug combination? The answer there would be $35,000 a year. And if we spend a $100,000 to give somebody three extra years of life, then that’s $33,000 a year. So it seems like if we’re spending money for the HIV positive patient at that level, we ought to be willing to spend that same amount of money to help cancer patients.
However, things are a lot more complicated than that simple example would suggest. So, in the case of cancer, one of the basic problems that I didn’t make perfectly clear in my earlier remarks is that even though I talked about a molecular feature of a cancer that is usually described as the driver of that metastatic cancer, and that is the target one of the targeted therapies, the fact of the matter is that in metastatic cancer there are going to typically be multiple drivers of a cancer. Most of them will be suppressed by the dominant driver. What happens in practice is that we’ve identified the dominant driver of the cancer, we give the individual a drug to kill that dominant driver, which it successfully does. And then another new driver emerges within that tumor, and then the tumor continues to grow, the cancer progresses. Now we may have another drug for that new driver, which will have roughly the same effect. It’ll kill that new driver and make room for yet another driver. But now, then, we’re providing to individuals several drugs in a row that have costs of $100,000 or $200,000 each. So, we’re spending a lot more money for a lot less good for these cancer patients. And so, the question for democratic deliberation is, what do we owe, under what particular circumstances, as a matter of what a just and caring society ought to be, to patients with metastatic cancer for whom there are these very expensive drugs that are only going to yield, for most patients, marginal benefit?
What I would ask an audience to imagine, when I’m working with an audience of individuals from the community, is that everybody in that room is probably very healthy. They have no idea what their future health vulnerabilities might be. Some people might say, well, we’ve got heart disease in the family, or some family history suggests cancer, but there’s still lots and lots of other health problems that you could have that could be deadly. The question is, if you don’t want to spend all your money on healthcare, and you don’t want to spend everybody else’s money on healthcare, then, collectively, what would you see as being reasonable investments of limited healthcare resources for addressing healthcare needs? Cancer needs, heart needs, Alzheimer’s disease needs, diabetic needs, psychiatric needs, needs associated with various kinds of disability. When you, in a thoughtful and objective way, try to consider the whole range of healthcare needs, where should we invest the limited dollars that we’re willing to provide? Right now, it’s 18% of our gross domestic product, roughly $4.1 trillion. Where are we willing to invest those dollars?
What led you to work that focuses on precision medicine? Was it natural from the other health policy work you have done, specifically work on allocating resources?
It was related both to allocating resources, because the cost of these drugs just leapt out at me, starting roughly in around 2010 or so. But the other thing was that I had been looking at a whole range of ethics and policy issues related to emerging genetic technologies. This was one of the newer elements associated with these emerging genetic technologies. This was a product of the Human Genome Project. Plus, the research that had been going on with regard to cancer, as researchers began to understand the extent to which cancer is this extraordinarily complex disease, that there’s not just sort of one or two or three drivers of these cancers. That there are different biological features of the cancer that are responsible for the cancer being so vigorous in multiplying. In brief, there’s that combination of the cost of these drugs and what that would do to distort the just allocation of health resources in our society, and the genetic features of these cancers that turned out to be so extraordinary genetically complex.
Something that strikes me, discussing these very expensive targeted therapies, is where does palliative care fit into the discussion of precision medicine?
For oncologists who are treating patients, for patients who have read something about precision medicine, for patients who have looked at some of the ads that are associated with precision medicine that have been on television, it’s very difficult to convince any of those patients that palliative care is something that they needed to give serious consideration to. Because it looked like these drugs could give them some very significant extensions of their life. And, of course, the fact of the matter is that there’s some percentage of patients who will get one or two or three extra years of life. There’s a teeny tiny percentage of patients who we call super responders, who might get seven, eight, ten extra years of life or more. At the moment we have no way of identifying before the fact how particular patients are going to respond to these drugs.
What happens is that patients imagine to themselves, I could be that person. Somebody is going to be a super responder, just like somebody ultimately wins that half a billion dollar lottery prize. How do I know it’s not me if I don’t buy a lottery ticket? How do I know it’s not me if I don’t take on this targeted cancer therapy? And if the first therapy doesn’t work, I heard that there’s a second and a third. And so as long as they seem to be doing something by way of controlling my cancer, of course I want that. I don’t want palliative care. So that’s sort of the psychological logic behind the reluctance of both patients and oncologists to recommend palliative care before it is just absolutely clear that nothing else is going to work.
What is one overall takeaway someone should get from this book? What is the question you want folks to continue thinking about?
What are we willing to accept as limits on access to very expensive marginally beneficial healthcare in our society? I want readers to think about the just caring problem, which is an extraordinarily complex problem. I’ve spent 50 years of my life thinking about this issue. And it’s only grown and become more complex over those 50 years, because of all the emerging life prolonging medical technologies that have come to be. Not just with regard to cancer, but with regard to heart disease, liver disease, lung disease, diabetes, and every other area of medicine that we care to name.
I’d like to add that ideally, ethically, I think we’re inclined to say, if we have a somewhat costly life prolonging care that’s effective, then everybody with the relevant need ought to have access to that if we are a just and caring society. If somebody has an inflamed appendix that is life threatening if they don’t receive the necessary surgery, then they ought to receive that surgery, whether they’re rich or poor, insured or uninsured. They ought not to be allowed to die. You will get, I think, very broad agreement in our society that that’s a just and reasonable kind of moral commitment we ought to make. It gets more difficult, though, to make that commitment when it comes to these extraordinarily expensive cancer drugs. And part of the problem is that in the United States probably no more than half of us are employed at places where we’re provided with very comprehensive health insurance, and where we’re not responsible for paying very much of the cost of our healthcare. But for the other half of the population who typically are working in lower wage jobs, who may be provided with some health insurance but it’s very marginal, it’s bare bones insurance. It’s the sort of insurance that requires that individuals pay 30 or 40% of the cost of these cancer drugs. And, of course, that’s impossible for individuals making $15, $20, $25, even $30 an hour. For a $150,000 drug, they cannot pay $30,000, and so they don’t get it. Nevertheless, they are paying through taxes, and through their insurance premiums, for others who would have access to these drugs. So that’s one of the fundamental inequities in our society, and the targeted cancer therapies make that inequity, I think, more visible. It doesn’t seem as if, as a society, we’re willing to address that challenge. However, that is one of the preeminent ethical challenges that must be addressed if we are to be a just and caring society.
Bioethics, Public Reason, and Religion is a new book from Center Professor Leonard M. Fleck, PhD. Published this month by Cambridge University Press as part of the Cambridge Elements Bioethics and Neuroethics series, the book is available to read online for free until August 26.
Fleck explores Rawlsian political liberalism, the limits of religious integrity, and examines the issues of physician aid-in-dying, the use of embryos in medical research, abortion, and the artificial womb.
Image description: The book cover of Bioethics, Public Reason, and Religion by Leonard M. Fleck has art that is a light blue abstract painting with tones of yellow and red. Image courtesy of Cambridge University Press.
“Given the United States Supreme Court Dobbs decision, this volume is especially timely since it is doubtful that the Dobbs decision could pass the public reason test—though readers are free to disagree with that conclusion,” said Fleck.
Summary: Can religious arguments provide a reasonable, justified basis for restrictive (coercive) public policies regarding numerous ethically and politically controversial medical interventions, such as research with human embryos, pre-implantation genetic diagnosis, or using artificial wombs? With Rawls, we answer negatively. Liberally reasonable policies must address these controversial technologies on the basis of public reasons accessible to all, even if not fully agreeable by all. Further, public democratic deliberation requires participants to construct these policies as citizens who are agnostic with respect to the truth of all comprehensive doctrines, whether secular or religious. The goal of these deliberations is practical, namely, to identify reasonable policy options that reflect fair terms of cooperation in a liberal, pluralistic society. Further, religious advocates may participate in formal policymaking processes as reasonable liberal citizens. Finally, public reason evolves through the deliberative process and all the novel technological challenges medicine generates for bioethics and related public policies.
Print copies of the book are also available for pre-order. The volume is a slim paperback, clearly written, and accessible for an undergraduate bioethics course that addresses several of these controversial bioethics issues as matters for public policy decision-making.
The Hastings Center has published a special report on “A Critical Moment in Bioethics: Reckoning with Anti‐Black Racism through Intergenerational Dialogue.” As stated in a news release announcing the report, it “calls on the field of bioethics to take the lead in efforts to remedy racial injustice and health inequities in the United States.”
The special report includes contributions from faculty in the Center for Bioethics and Social Justice. The essay “Colonial Geographies, Black Geographies, and Bioethics” comes from Jennifer McCurdy, PhD, assistant professor. Additionally, “On the Shoulders of Giants: A Reckoning with Social Justice” was co-authored by Libby Bogdan-Lovis, specialist emerita, Karen Kelly-Blake, PhD, associate director of academic programming, and Wendy Jiang, MPH (MD candidate at University of Alabama at Birmingham).
My essay introduces bioethicists to the works of Dr. Katherine McKittrick on human geography, racism, and colonialism. Free access. #CiteBlackWomenhttps://t.co/kukgsLyoAo
The editors of this special report are Faith E. Fletcher, PhD, MA; Keisha S. Ray, PhD; Virginia A. Brown, PhD, MA; and Patrick T. Smith, PhD, MDiv, MA. Fletcher, Senior Advisor at The Hastings Center and recent40 Under 40 Leaders in Health Award Winner, is an alumna of the Center for Bioethics and Social Justice’s former MA program in Bioethics, Humanities, and Society.
Check out our Hastings Center Special Report on Anti-Black Racism in Bioethics. We labored in love, in community, & in dialogue with our elders. This intergenerational work was birthed through solidarity, collaboration, & resistance. https://t.co/7dHNxA8YK3https://t.co/K4owM30bAt
— Faith Fletcher, PhD, MA (@FaithEFletcher) May 2, 2022
Center Professor Leonard Fleck, PhD, has had two articles published so far this year. Online ahead of print is “Precision medicine and the fragmentation of solidarity (and justice)” in the European journal Medicine, Health Care and Philosophy. In the article Fleck “offer[s] multiple examples of how current and future dissemination of […] targeted cancer drugs threaten a commitment to solidarity.”
Fleck and co-author Leslie Francis, PhD, JD, were published in the most recent issue of Cambridge Quarterly of Healthcare Ethics. Their article debates the question: “Should Whole Genome Sequencing be Publicly Funded for Everyone as a Matter of Healthcare Justice?”
In the February issue of Studies in History and Philosophy of Science, Center Director and Associate Professor Sean Valles, PhD, has a reply by the author in response to reviews of his 2018 book Philosophy of Population Health: Philosophy for a New Public Health Era. The book forum section of the issue includes three reviews of Valles’ book from Eric Mykhalovskiy, Quill R. Kukla, and Ross Upshur.
Assistant Professor Dr. Laura Cabrera is the author of a guest editorial on “The Need for Guidance around Recruitment and Consent Practices in Intracranial Electrophysiology Research,” published in the current issue of AJOB Neuroscience. Dr. Cabrera stresses the importance of the involvement of institutional review boards and funding agencies with regard to study recruitment and participant consent.
The full text is available online via Taylor & Francis Online (MSU Library or other institutional access may be required to view this article).
Center Assistant Professor Dr. Laura Cabrera is co-author of an article published last month in Frontiers in Human Neuroscience. Appearing in the Brain Imaging and Stimulation section of the journal, “International Legal Approaches to Neurosurgery for Psychiatric Disorders” was written by an international group of researchers.
Abstract: Neurosurgery for psychiatric disorders (NPD), also sometimes referred to as psychosurgery, is rapidly evolving, with new techniques and indications being investigated actively. Many within the field have suggested that some form of guidelines or regulations are needed to help ensure that a promising field develops safely. Multiple countries have enacted specific laws regulating NPD. This article reviews NPD-specific laws drawn from North and South America, Asia and Europe, in order to identify the typical form and contents of these laws and to set the groundwork for the design of an optimal regulation for the field. Key challenges for this design that are revealed by the review are how to define the scope of the law (what should be regulated), what types of regulations are required (eligibility criteria, approval procedures, data collection, and oversight mechanisms), and how to approach international harmonization given the potential migration of researchers and patients.
The full article is available online with free and open access from Frontiers.
Center for Ethics professor Dr. Leonard M. Fleck is among a group of seventeen international co-authors of “Heritable Human Genome Editing: The Public Engagement Imperative,” published in the December 2020 issue of The CRISPR Journal.
Abstract: In the view of many, heritable human genome editing (HHGE) harbors the remedial potential of ridding the world of deadly genetic diseases. A Hippocratic obligation, if there ever was one, HHGE is widely viewed as a life-sustaining proposition. The national go/no-go decision regarding the implementation of HHGE, however, must not, in the collective view of the authors, proceed absent thorough public engagement. A comparable call for an “extensive societal dialogue” was recently issued by the International Commission on the Clinical Use of Human Germline Genome Editing. In this communication, the authors lay out the foundational principles undergirding the formation, modification, and evaluation of public opinion. It is against this backdrop that the societal decision to warrant or enjoin the clinical conduct of HHGE will doubtlessly transpire.
The full text is available with free access on the publisher’s website.
Delighted to post our latest contribution on the public engagement imperative re: remedial germline genome editing. Published in the The CRISPR Journal with @CohenProf & 16 contributors from around the world, the paper delineates the ways by which public opinion is formed. pic.twitter.com/whTP3ezVUf
Authors Aakash A. Dave and Dr. Laura Cabrera, Assistant Professor in the Center for Ethics, have an article in the December issue of the Journal of Cognitive Enhancement. The article, “Osteopathic Medical Students’ Attitudes Towards Different Modalities of Neuroenhancement: a Pilot Study,” was available online first in January of this year.
Abstract: The advancement of society has coincided with the development and use of technologies intended to improve cognitive function, which are collectively known as neuroenhancers. While several studies have assessed public perception towards the moral acceptability of pharmacological and device-based cognitive enhancers, just a few have compared perceptions across different modalities of cognitive enhancers. In this pilot study, 154 osteopathic medical students were asked to read one of six possible vignettes describing a certain type of improvement—therapy or above the norm—brought about by using one of three modalities—neurodevice, pill, or herbal supplement. Subjects answered questions that were designed to reveal their attitudes towards the given scenario. Our participants suggested that improvement using neurodevices and herbal supplements is more acceptable than when pills are used. We also found that acceptable attitudes towards cognitive enhancement were subserved by reasons such as “positive outcome from use” and “it’s safe” and unacceptable attitudes by reasons such as “safety concerns” and “no need.” Furthermore, a majority of participants would prefer to consult with a physician regarding the use of cognitive enhancers prior to accessing them. These results provide novel insights into pressing neuroethical issues and warrant further studying.
The full text is available online via Springer Link (MSU Library or other institutional access may be required to view this article).
In the current issue of the Hastings Center Report, Center Acting Director and Professor Dr. Leonard Fleck shared a perspective on “Some Lives Matter: The Dirty Little Secret of the U.S. Health Care System.”
Abstract: Our health care system in the United States reflects the inequities that are part of the larger society, which is why our system for financing access to needed and effective health care is so complicated and unfair.
To our #health care system, only some lives matter. In this FREE piece by Dr. Fleck in HCR, he talks about how Black lives matter. "Sickle cell disease afflicts about one hundred thousand Americans, the vast majority of whom are Black." #BLM@msubioethicshttps://t.co/cDc62n0MEh
MSU Bioethics 