Category: Friends of the Center

Microaggressions have big impacts for disabled users online

Originally published by Cornell University Cornell Ann S. Bowers College of Computing and Information Science

By Patricia Waldron

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.

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

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.

Dr. Cabrera gives community talk on psychiatric neurosurgery

Laura Cabrera photoOn February 18, Center Assistant Professor Dr. Laura Cabrera presented a talk entitled “The ethics of psychiatric neurosurgery” at Schuler Books & Music in Okemos. The event was part of the Cafe Scientifique series presented by the Lansing Community College Science Department.

In her presentation Dr. Cabrera shared results from her Science and Society at State grant with the audience, and discussed how the insights from that project led to her current NIH-funded project, “Is the Treatment Perceived to be Worse than the Disease?: Ethical Concerns and Attitudes towards Psychiatric Electroceutical Interventions.” The presentation also highlighted the role of neuroethics in examining and addressing public perceptions and values around psychiatric neurosurgery.

Visit the Lansing Community College website for information on future Cafe Scientifique events, which are free to attend and open to the public.

Bioethics for Breakfast: Can Pharmaceutical Cost Control Be Achieved Ethically with Surgical Precision?

Bioethics for Breakfast Seminars in Medicine, Law and SocietyPaula Cunningham and Craig Hunter presented at the February 6th Bioethics for Breakfast event, offering perspectives and insight on the topic “Health Reform: Can Pharmaceutical Cost Control Be Achieved Ethically with Surgical Precision?”

This year’s Bioethics for Breakfast series is focused on a central theme: “Is There a Cure for Our Sick Health Care System?” The series is generously sponsored by Hall, Render, Killian, Heath & Lyman.

There is virtually unanimous agreement among health policy analysts that something must be done to control health care costs, especially pharmaceutical costs, which are often a major burden for the elderly. Consumers and taxpayers are also demanding that health care costs be controlled and reduced, most often with regard to drugs. This is why the recent focus has been on the price of drugs. However, any practical proposal to reduce drug health care costs has been denounced as rationing and/or as a threat to medical innovation. The result has been political inertia and economic exuberance (for for-profit health care corporations), with $3.8 trillion in U.S. health spending in 2019 and projections of $6.0 trillion total health spending for 2027. What forms of drug-related health care cost control are you willing to accept for yourself and those you care about? What do you see as the ethical challenges that must be addressed by any effort to control such health care costs, especially for the elderly?

Speaker Paula Cunningham, State Director of AARP Michigan, highlighted the struggles that people in Michigan face regarding the price of prescription drugs, noting that some individuals travel to Canada because the cost there is drastically lower. Cunningham shared the AARP “Stop Rx Greed” campaign as an example of their advocacy work in this area. She also noted that there are several pieces of legislation being worked on in Michigan and at the national level, such as an importation bill, that would reduce prescription drug costs. She finally stressed that this issue is not just about data and facts, it is about people’s lives.

Speaker Craig Hunter, Director of Specialty Program Outcomes and Analytics for CVS Health, brought industry expertise to the discussion and provided an economic perspective on the issue. He shared three main points, the first being that we need to rethink the question “can medical outcomes be achieved ethically with surgical precision?” because economic structures in the U.S. are not set up in a way that drives synergy. Hunter then discussed the need for structural changes to encourage creative solutions. When asking those in attendance if they believed that drugs in the U.S. are a public good, a minority responded in agreement. Hunter pointed out that this question has been answered very differently in other countries. Finally, Hunter noted that, regardless of “right or wrong,” the market is responding to its own stimulus; the business has been incentivised for certain outcomes.

Attendee questions and comments came from a variety of perspectives, including physicians, legislative staff, and community leaders. There was discussion of direct-to-consumer advertising, drug patents, and the barriers that exist for the consumer within this complex system.

About the Speakers

Paula Cunningham
Paula Cunningham, MLIR, is State Director of AARP Michigan, which has more than 1.4 million members. She is former President of Lansing Community College, and in the business community was CEO of Capitol National Bank. She serves on numerous boards, including, but not limited to, Davenport University and McLaren Health Systems-Lansing. Paula is in the Michigan Women’s Hall of Fame and was the first African American woman in the country to be president of a majority owned bank.

Craig Hunter
Craig Hunter is the Director of Specialty Program Outcomes and Analytics for CVS Health, providing leadership and oversight for outcomes-based financial reconciliations negotiated across specialty drug and patient management products. Previously Craig worked at Eli Lilly, first as the Lead Outcomes Scientist for the U.S. Alzheimer’s and Oncology franchises, and later leading U.S. Outcomes Customer Engagement. Additional previous experience includes time consulting as well as Primary Investigator for a USAID-funded project examining the intersection of traditional and western medicine in South Africa. Craig earned his MPP from the University of Chicago and a BA in Communications (Rhetoric)/Political Science from Furman University.

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.

Bioethics for Breakfast: Our Sick Health Care System: What’s the Differential Diagnosis?

Bioethics for Breakfast Seminars in Medicine, Law and SocietyLaura Appel and Marti Lolli presented at the December 5th Bioethics for Breakfast event, offering perspectives and insight on the topic “Our Sick Health Care System: What’s the Differential Diagnosis?”

This year’s Bioethics for Breakfast series centers on the theme “Is There a Cure for Our Sick Health Care System?” The series is generously sponsored by Hall, Render, Killian, Heath & Lyman.

Our health care system is exhibiting multiple symptoms of serious illness. Treating symptoms is rarely a good idea. What we need is a differential diagnosis. What are the root causes for skyrocketing costs, increasing access barriers, physician burnout, patient non-adherence and dis-satisfaction, failed therapies, and so on? Too many greedy profit-takers? Too many stingy insurers? Too much administrative bureaucracy? Too much competition? Too little competition? Too much unhealthy behavior by patients? Too little time for patients? Too much technology? Large empathy deficits? Too little prevention? Too many medical specialists? Too few primary care physicians? Not enough evidence-based medicine? Too much waste and inefficiency? Too many hospital mergers? Too fragmented a financing system? Patients demanding too much care? Unregulated drug prices? Too many special interests shaping health care policy?

Addressing these questions, Priority Health’s Marti Lolli first emphasized that these challenges are complex and cannot be simplified. She posited that there is enough money in the system—collectively we must get creative. In “diagnosing” our health care system, she put forward three items: 1) radically overhaul the fee-for-service system, 2) move away from the “one size fits all” health care model, and 3) accept data, technology, and transparency.

Michigan Health & Hospital Association’s Laura Appel then shared her perspective. Her three-item “diagnosis” began with the first point that there is a focus on health care when the underlying problem is health. One example she gave was that kidney disease in Michigan cost Medicaid $1 billion, stating, “We cannot change the output if we don’t change the input.” Her second item was that we don’t really have a “system,” also discussing the need for more behavioral health resources. Her third item focused on evidence, and that overall, to have a “system,” the system needs to respond to the evidence, recognizing what needs to change.

 
Attendee questions and comments addressed a variety of topics, including caregiver education, advance care planning, evidence-based medicine in practice, and social and structural determinants of health. Finally, one overarching point that those in attendance seemed to agree on: change is hard.

Marti Lolli Laura Appel and Leonard Fleck speaking to audience
Image description: pictured left to right are Marti Lolli, Laura Appel, and Leonard Fleck during the question and answers portion of Bioethics for Breakfast on December 5. Image source: Liz McDaniel/Center for Ethics.

About the Speakers

Laura Appel
Laura Appel is senior vice president and chief innovation officer at the Michigan Health & Hospital Association. She focuses on healthcare policy, hospital finance, legislation and governance. At the federal level, she represents the interests of Michigan hospitals and health systems in both the legislative and regulatory arenas on key issues, including federal healthcare reform and Medicare. She is an expert in auto insurance and legislative policy and has a proven ability to influence legislation and healthcare policy through her understanding of the issues, educating influencers and policymakers, and introducing fresh ideas.

Marti Lolli, MBA
Marti Lolli is chief marketing officer and senior vice president of consumer and government markets at Priority Health, a nationally recognized health plan. She oversees the individual market, Medicare advantage and Medicaid markets, and market intelligence. She also oversees all marketing, digital strategy, communications and customer experience at Priority Health. Her areas of expertise include consumerism in health care, market trends in health care, competitive and consumer analytics, health care reform, health care innovation and strategic planning.

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.

Bioethics for Breakfast: Medicare for All: What Should That Mean?

Bioethics for Breakfast Seminars in Medicine, Law and SocietyStacey Hettiger and Rick Murdock presented at the September 26th Bioethics for Breakfast event, offering perspectives and insight on the topic “Medicare for All: What Should That Mean?”

“Medicare for All” has become a contentious political slogan. Advocates for various versions of the slogan want to see everyone have access to needed and affordable health care. Critics see all versions of the slogan as unaffordable and hostile to individual liberty. Is compromise possible? Can we have some level of affordable health care for everyone in our society? Can this be accomplished in ways that are congruent with our most fundamental political values? Event speakers addressed these questions and more, inviting response and discussion from those in attendance.

This year’s Bioethics for Breakfast series centers on the theme “Is There a Cure for Our Sick Health Care System?”

About the Speakers

Stacey Hettiger
Stacey Hettiger is Director of Medical and Regulatory Policy at Michigan State Medical Society. Her responsibilities include developing materials, programming, and member communications in the areas of legal and regulatory compliance and State and Federal quality initiatives. This includes advocacy and outreach on issues affecting the delivery of health care such as HIPAA, physician payment models and incentives, and practice transformation. Prior to joining MSMS, Stacey worked for twenty years in the Michigan State Legislature.

Rick Murdock
Rick Murdock retired from the Michigan Association of Health Plans in 2017 after 12 years as executive director, and has since been consulting with the MAHP Foundation to coordinate the Michigan ACE (adverse childhood experiences) Initiative. Prior to joining MAHP, he spent three years working in the Michigan legislature, followed by 18 years in the State Budget Office (mental health and Medicaid and health planning). Additionally he spent 6 years in Medicaid administering the Medicaid managed care program. He has a master’s degree in public health from the University of Michigan School of Public Health.

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.

Bioethics for Breakfast: Fitness, Frailty, and the Challenges of Successful Aging

Bioethics for Breakfast Seminars in Medicine, Law and SocietyFrancis Komara, DO, and Scott Wamsley presented at the April 25th Bioethics for Breakfast event, offering perspectives and insight on the topic “Fitness, Frailty, and the Challenges of Successful Aging.”

In very concrete terms, what should “healthy aging” mean when we wish to be a just and caring society? We start from these facts: (1) the size of the elderly and hyper-elderly population in Michigan and nationwide is growing rapidly; (2) costly health needs are much more common among the elderly than among the non-elderly; (3) if we are completely responsive to the health needs of the elderly, will we unfairly shortchange the health needs of the non-elderly?; (4) there are great disparities among the health needs of the elderly themselves (so what do we need to do to correct that initial state of affairs?); (5) are family caregivers excessively burdened by things as they are—what can we do socially that is affordable to relieve those burdens?

How does “aging in place” work, given the five challenges listed above, especially for those elderly who are in near poverty conditions? This Bioethics for Breakfast explored these and other questions.

Francis Komara, DO
Dr. Francis Komara is a Professor in the Department of Family and Community Medicine (FCM) and Director of the Geriatric Fellowship Program in the Michigan State University College of Osteopathic Medicine. Dr. Komara is a geriatrician who formerly practiced at the FCM clinic at MSU, and was formerly medical director of the Medical Care Facility and Rehabilitation Services of Ingham County, and medical director of McLaren Visiting Nurse & Hospice. Dr. Komara received his medical degree from the Chicago College of Osteopathic Medicine.

Scott Wamsley
Scott Wamsley is Deputy Director of the Aging & Adult Services Agency in the Michigan Department of Health and Human Services. Mr. Wamsley has more than twenty years of experience in the field of aging services. He holds a master’s degree in public administration and a bachelor’s degree in political science from Eastern Michigan University.

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.

Bioethics for Breakfast: Addressing Maternal Mortality in the Childbearing Year

Bioethics for Breakfast Seminars in Medicine, Law and SocietyEvery woman who dies during or after pregnancy has a story to tell, a story that can teach us how to prevent other maternal deaths.

Renée Canady, PhD, MPA, and Cheryl Larry-Osman, RN, MS, CNM, presented at the February 21st Bioethics for Breakfast event, offering perspectives and insight on the topic “Just Caring for All Michigan Mothers: Addressing Maternal Mortality in the Childbearing Year.” Drawing from the 2018 Michigan Maternal Mortality Surveillance report, the speakers reminded the audience that “every woman who dies during or after pregnancy has a story to tell, a story that can teach us how to prevent other maternal deaths.” The presenters introduced the session with compelling personal experiences, illustrating the scope and scale of the problem. Using an ethics yardstick Dr. Canady then invited the 33-member audience to respond to graphic depictions of the U.S. maternal mortality death rate – the highest rate within the developed world. Those numbers give evidence of a profound social injustice and a need to modify resource allocation accordingly.

Yet as in much of the U.S., evidence suggests that Michigan has not met the mark. As the speakers noted, race matters – a lot. From 2011-2015 Black women in Michigan were found to be three times more likely than white women to die of a pregnancy-related cause; upon review nearly half (44%) were considered preventable. Black mothers in Michigan were twice as likely to die from a pregnancy-associated cause; upon review, 39% were deemed preventable. Social and medical advances have disproportionately failed to address pregnancy needs for Black mothers. Sociodemographic variables do not fully explain the observed gap – the disparities are rooted in multilevel (system, practitioner, patient) inequalities including place, communication, and discrimination. A health equity approach recognizes that one must comprehensively address institutional racism, class oppression, and exploitative gender discrimination.

As a just and caring society we have an obligation to ensure safe and healthy pregnancy and birth experiences for all mothers. Ms. Larry-Osman noted that a virtue ethics approach leans on the character of health professionals to engage compassion, reason and discipline in the interest of maternal well-being. In concert, a communitarian ethics approach emphasizes shared values, ideals and goals to identify barriers to care as well as interventions and solutions. As reported by attendee Lynette Biery, Maternal Child Health Director at the Michigan Department of Health and Human Services, maternal mortality reviews such as the Michigan Maternal Mortality Surveillance Program provide data necessary to address changes that would improve women’s health before, during and after pregnancy. Michigan has seen some improvement after the 2016 implementation of hemorrhage and hypertension “safety bundles” and the MI-AIM (Alliance for Innovation on Maternal Health) is now working on opioid bundles as well. But given the scale of the problem, are such efforts enough?

Approximately 50% of Michigan women rely on Medicaid for prenatal care and give birth in a Medicaid supported hospital, but that program is targeted for cuts under the current federal administration. What is the state/physician obligation to address this? Should the state ensure the availability of labor support “doulas” as part of standard maternity care as is being done in other states? Mortality reviews help, but are they sufficient to raise awareness and address the multilevel problems? What structural strategies might best pave the way for continuity of care and community care? How can solutions avoid racist calls for “personal responsibility for heath”? What are the effects of pervasive racism and how might the state best address them? Many in audience lingered past the session’s end to continue discussing these questions. Our thanks to health law firm Hall, Render, Killian, Heath & Lyman for generously supporting these important conversations.

Renée Canady
Renée Canady, PhD, MPA, is Chief Executive Officer of the Michigan Public Health Institute. She is a nationally recognized thought leader in health disparities and inequities, cultural competence, and social justice. She additionally is Assistant Professor in MSU’s Division of Public Health within the College of Human Medicine. In her scholarly work, she emphasizes the social context of mental and physical health, and the pregnancy experiences of African-American women.

Cheryl Larry-Osman
Cheryl Larry-Osman, RN, MS, CNM, is a Perinatal Clinical Nurse Specialist at Henry Ford Hospital (Detroit). She additionally is trained as a Healthcare Equity Ambassador for the hospital and serves as a cultural competency and healthcare equity expert within that system. She has over 18 years of experience in obstetrics and is a passionate advocate for the optimal and equitable care of women and children.

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.

Bioethics for Breakfast: Biobanking Tissue: Trash or Treasure?

Bioethics for Breakfast Seminars in Medicine, Law and SocietyJennifer Carter-Johnson, PhD, JD, and Tom Tomlinson, PhD, presented at the Bioethics for Breakfast event on December 6, 2018, offering their perspectives and insight on the topic “Biobanking Tissue: Trash or Treasure?”

“Big data”—repositories of biological, medical and demographic information about large numbers of people—is a critical platform for discovery of the causes of disease and potential new avenues for its treatment.

This data must come from us, the general public. Data about you might end up in a biobank because you’ve generously agreed to provide it, perhaps by agreeing to join the National Institutes of Health’s All of Us project that aims to recruit a broad representative sample of one million Americans.

Or it might already have been provided for use in research without your knowledge or consent. Research using specimens and medical information collected during your clinical care, once de-identified, doesn’t count as research on a “human subject” under the Federal regulations. Thus, your consent is not required. This source probably provides the great majority of information used in big data research, and acquiring and distributing it has become a multimillion dollar business.

This practice raises a host of questions. Doesn’t my specimen and my medical information belong to me, rather than to the hospital or clinic that collects it? Or have I thrown it away like my trash sitting on the curb each week? Although many people may feel comfortable providing this information for research, others might not. So isn’t it a simple act of respect to ask first? Or are researchers simply the medical equivalent of college students dumpster diving for cheap furniture that has been thrown away? Additionally, if we ask, and too many people say “no,” won’t critical research be hampered, to the detriment of all of us?

Dr. Tomlinson asked attendees to consider this question: Should clinically-acquired specimens and other medical information be treated like the trash that you have no control of once it has left your curb?

Dr. Tomlinson referred to a national study that his research team conducted in 2014 regarding willingness to give blanket consent, focusing on the fact that people care about more than risk – they have concern about how their materials may be used, and they worry about how much they should trust the research establishment. Dr. Tomlinson’s overarching argument was that respect for persons, a fundamental bioethics principle, requires informed consent.

Dr. Carter-Johnson also offered a question: whose treasure is it? Biospecimens and related data can be donated by patients and the public, can be clinically collected de-identified materials, and they can be samples given to private companies like 23andMe or Ancestry.com. Dr. Carter-Johnson also discussed a new startup offering to sequence your genome for free, and highlighted the variety of health and fitness apps that we give our data too. “When something is free, you are the product,” she said. A show of hands revealed that a minority of the attendees had gotten their DNA sequenced.

Dr. Carter-Johnson offered a legal perspective on tissue and genetic data in relation to property and privacy rights. She explained that individuals do not own their own tissue, citing the cases Moore v. Regents of California and Greenberg v. Miami Children’s Hospital Research Institute. However, there have been exceptions, and there are legal ways to “sell” your body (think plasma, bone marrow, sperm, or clinical trials).

When discussing privacy, Dr. Carter-Johnson used 23andMe and Ancestry.com’s privacy policies as examples. These policies are contractual, they are updated frequently, and they are often ignored by the consumer. However, push from consumers as well as bioethicists have led to these policies being more available and accessible.

Audience discussion brought up the famous Henrietta Lacks case, the future of biobank donor policies, and newborn screening programs and biobanks.

Jennifer Carter-Johnson, PhD, JD
Jennifer Carter-Johnson is an Associate Professor of Law at the Michigan State University College of Law and holds both a JD and a PhD in Microbiology. Professor Carter-Johnson uses her interdisciplinary training to study the intersection of law and scientific research.

Tom Tomlinson, PhD
Tom Tomlinson was Director of the Center for Ethics and Humanities in the Life Sciences from 2000 to 2018, and is a Professor in the Department of Philosophy. He chairs the Ethics Committee at Sparrow Health System, and has published widely on the ethics of biobank-based research.

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.