Who “owns” the healthcare data about you?

Bioethics Public Seminar Series purple and teal icon

The 2020-2021 Bioethics Public Seminar Series continues next month on March 24. You are invited to join us virtually to learn about artificial intelligence and healthcare data ownership. Our seminars are free to attend and open to all individuals.

Healthcare Artificial Intelligence Needs Patient Data: Who “Owns” the Data About You?

Adam Alessio photo
Adam M. Alessio, PhD

Event Flyer
Zoom registration: bit.ly/bioethics-alessio

Artificial intelligence (AI) is increasingly used in modern medicine to improve diagnostics, therapy selection, and more. These computer algorithms are developed, trained, and tested with our patient medical data. Certainly beyond the healthcare space, many companies—from Facebook to Amazon to your local pub—are using our consumer data. This is data about you, but is it your data? What rights do you have versus the owners of the data? Does medical data used for the benefit of future patients deserve different treatment than consumer data? This lecture will explore examples of AI and an evolving view of data ownership and stewardship in medicine.

March 24 calendar icon

Join us for Dr. Alessio’s online lecture on Wednesday, March 24, 2021 from noon until 1 pm ET.

Adam M. Alessio, PhD, is a professor in the departments of Computational Mathematics, Science, and Engineering (CMSE), Biomedical Engineering (BME), and Radiology. He earned a PhD in Electrical Engineering at the University of Notre Dame and then joined the University of Washington faculty where he was a Professor in the Department of Radiology until 2018. He moved to MSU to be part of the new CMSE and BME departments and the Institute for Quantitative Health Science and Engineering. His research is focused on non-invasive quantification of disease through Artificial Intelligence-inspired algorithms. Dr. Alessio’s research group solves clinically motivated research problems at the intersection of imaging and medical decision-making. He is the author of over 100 publications, holds 6 patents, and has grant funding from the National Institutes of Health and the medical imaging industry to advance non-invasive cardiac, cancer, and pediatric imaging. Dr. Alessio is also the administrative director of the new Bachelor of Science in Data Science at MSU and is looking for partners in the development of a data ethics curriculum at MSU.

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.

Dr. Karen Kelly-Blake promoted to associate professor

Karen Kelly-Blake photoThe Center for Ethics and Humanities in the Life Sciences is thrilled to announce the promotion of Dr. Karen Kelly-Blake to associate professor. Dr. Kelly-Blake holds an appointment in both the Center for Ethics and the Department of Medicine in the College of Human Medicine (CHM).

Dr. Kelly-Blake holds a PhD in medical anthropology from Michigan State University and specializes in health services research, shared decision-making, and medical workforce policy and development. She joined the Center in 2009 as a project manager on a grant of Dr. Margaret Holmes-Rovner’s, became a research associate in 2011, and assistant professor in 2014. She has played an integral part in the development and implementation of social context of clinical decisions (SCCD) content in the CHM Shared Discovery Curriculum.

Dr. Kelly-Blake is currently working with colleagues in the Department of Medicine, the Department of Writing, Rhetoric, and American Cultures, and the Department of Epidemiology and Biostatistics to resubmit an NIH R01 to assess implementation of the Office Guidelines Applied to Practice Program for medication adherence for heart disease management in people with diabetes in Federally Qualified Healthcare Centers across the state of Michigan. She is also working with colleagues at the University of Michigan to submit a new NIH R01 to assess a multi-level clinical intervention for patient navigator enhanced colorectal cancer screening in community primary care practice settings. Additionally, she is working with the Assistant Director of the Center for Ethics on a project to assess the value of patient-physician concordance on patient health outcomes.

Please join us in congratulating Dr. Kelly-Blake!

Dr. Stahl presents on women’s pain panel at Conference on Medicine & Religion

Devan Stahl photoCenter Assistant Professor Dr. Devan Stahl recently attended the 2019 Conference on Medicine & Religion, held in Durham, NC. Dr. Stahl was part of a panel titled “”Ask Me about My Uterus:” Theological Responses to Women’s Pain in Contemporary Western Medicine.”

The three panelists, all women living with chronic pain or chronic illness, discussed their experiences dealing with pain, and the theological resources that have helped with that endeavor. Dr. Stahl discussed how the Desert Mothers provide models for understanding and handling pain in illness. Overall, the panel considered “how a theological re- narration of chronic pain might offer insight into the significance of women’s pain as well as resources for meaning-making in the midst of pain.”

Read more about this panel on the conference website.

Announcing the Spring 2019 Bioethics Brownbag & Webinar Series

bbag-icon-decIt’s almost time for the 2018-2019 Bioethics Brownbag & Webinar Series to resume! This spring we’ll hear from Center for Ethics faculty on the topics of aging and extending the human lifespan, as well as the social and ethical considerations of female cosmetic genital surgery. Please join us in person, or join the webinar livestream from any location. Visit the series webpage for more information.

Spring 2019 Series Flyer

February 13 calendar iconShould We Be Reaching for Immortality?
Wednesday, February 13, 2019

So long as life is good, who wouldn’t want to live as long as possible? The question turns out to be more complicated than it sounds.

Tom Tomlinson, PhD, is a Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Philosophy at Michigan State University.

March 13 calendar iconFemale Cosmetic Genital Surgery: Social and Ethical Considerations
Wednesday, March 13, 2019

This talk will discuss the latest innovations in female cosmetic genital surgery, the history behind the medical community’s involvement in defining women’s sexuality, and the ethical and social challenges these surgeries present.

Devan Stahl, PhD, is an Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Pediatrics and Human Development at Michigan State University.

In person: These lectures will take place from 12:00-1:00 PM in C102 (Patenge Room) 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? Every lecture is recorded and posted for viewing in our archive. If you’d like to receive a reminder before each lecture, please subscribe to our mailing list.

Announcing the Fall 2018 Bioethics Brownbag & Webinar Series

bbag-icon-decThe Center for Ethics and Humanities in the Life Sciences at Michigan State University is proud to announce the 2018-2019 Bioethics Brownbag & Webinar Series, which features a variety of bioethics topics. The series will begin on September 19, 2018. You are invited to join us in person or watch live online from anywhere in the world! Information about the fall series is listed below. Please visit our website for more details, including the full description and speaker bio for each event.

Fall 2018 Series Flyer

sept19-bbagTherapeutic Privilege in Psychiatry? The Case of Borderline Personality Disorder
Why do behavioral health care professionals often hesitate to discuss BPD with their patients even when it is clear they have this disorder?
Wednesday, September 19, 2018; C102 Patenge Room, East Fee Hall
Dominic A. Sisti, PhD, is Director, The Scattergood Program for Applied Ethics of Behavioral Health Care; Assistant Professor, Department of Medical Ethics & Health Policy; Assistant Professor, Department of Psychiatry, Perelman School of Medicine at the University of Pennsylvania.

oct-10-bbagEnding Medical Self-Regulation: Does Less Physician Control Improve Patient Safety and Protect Patient Rights?
Wednesday, October 10, 2018; E4 Fee Hall
Thaddeus Mason Pope, JD, PhD, is Director of the Health Law Institute at Mitchell Hamline School of Law.

In person: These lectures will take place from 12:00-1:00 PM (Eastern Time) 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? Every lecture is recorded and posted for viewing in our archive. If you’d like to receive a reminder before each lecture, please subscribe to our mailing list.

Dr. Fleck published in new ‘Ethics, Medicine and Public Health’ issue

Leonard Fleck photoCenter Professor Dr. Leonard Fleck has a new article in Ethics, Medicine and Public Health. Dr. Fleck’s article, “Just caring: Do we need philosophical foundations?,” appears in the April-June 2017 issue.

Abstract
The “Just Caring” problem asks: What does it mean to be a “just” and “caring” society when we have only limited resources (money) to meet virtually unlimited health care needs (linked to novel emerging medical technologies)? The practical implication of the “Just Caring” problem is that the need for health care rationing is inescapable. That means that some health care needs will not be met, even though those needs have moral weight, because meeting such needs is presumptively a matter of justice. How then can such rationing decisions be made justly or fairly? And who should have responsibility for making such decisions? Should such decision-making be the responsibility of legislative bodies, or administrators of health care institutions, or associations of physicians, or private insurers (in the United States), or employers (in the United States)? What should be the role of philosophers in addressing the problem of just health care rationing? After all, philosophers are supposed to be the experts when it comes to theories of justice. And, if philosophers are supposed to have such a role, are their judgments of health care justice going to be justified by appeal to ethical foundations of some sort? In this essay, I start by conceding that philosophers have had much to say about how we ought to conceptualize our understanding of the notion of justice. But the world has become enormously more complicated since Plato and Aristotle offered their reflections on justice. The same is true for Hume and Kant. Those perspectives seem remote and unhelpful about the problem of just health care rationing. The same would seem to be true about Rawls (1971) and Nozick (1974). Their theories of justice are simply too broad and too abstract to address the complex, heterogeneous problems of just health care rationing in the real world of health care we have today (though, as I show later, Rawls does have much to offer regarding the notion of public reason).1 In the first part of this essay I sketch out several concrete problems of health care rationing having to do with the allocation of targeted cancer therapies, drugs used to treat patients at risk for heart disease, drugs used to treat HIV+ patients, and drugs used to treat very rare diseases. This provides helpful context for the remainder of the essay. In the second part of this essay I argue that traditional theories of justice have only a limited role to play in addressing these problems of health care rationing. This is because no perfectly just answer can be given for the vast majority of real world problems of health care justice. Instead, what we need to settle for are non-ideal resolutions of these problems. Ultimately, I would defend a pluralistic conception of health care justice, which is another reason why we need to settle for non-ideal resolutions. Those non-ideal resolutions will have to emerge from broad, inclusive, fair processes of rational democratic deliberation. Those deliberations will be aimed at achieving a reflective balance of competing considerations of health care justice with respect to a very specific problem of health care rationing. In the third part of this essay, I argue that the role of philosophers is to protect the integrity of this public deliberative process, as opposed to seeking ethical foundations for their judgments of health care justice. This, I argue, entails three responsibilities for philosophers. First, these public deliberations need what we might call “just boundaries”. Those boundaries are defined by what I refer to as “constitutional principles of health care justice”. The role of philosophers is to articulate those constitutional principles and what counts as a reasonable balance among those principles as they are applied to specific problems of just health care rationing. Second, the role of philosophers is to articulate a specific understanding of “public reason”, which would govern those democratic deliberations. Here I have in mind the work of Rawls and his notions of “the rational” and “the reasonable” (Rawls, 1993). Third, philosophers have their traditional Socratic role of being thoughtful critics of the outcomes of these public deliberations, mindful of the fact that most outcomes will be non-ideally just. That is, philosophers must distinguish outcomes that are non-ideally “just enough” from those that are not “just enough”. Ultimately, the role of philosophers is not to construct or discover just foundations for these deliberative processes but to protect the fairness and integrity of the deliberative process itself.

The full text is available on the ScienceDirect website (MSU Library or other institutional access may be required to view this article).