This month the Center for Ethics is wishing a happy retirement to Dr. Tom Tomlinson. Dr. Tomlinson, Professor in the Center and the Department of Philosophy, served as Center Director for eighteen years, from 2000-2018. Under his guidance the Center’s core faculty members directed their ongoing attention to understanding varied aspects of the human condition including chronic illness, birthing, disability, international research ethics, spirituality, and neuroethics, to name only a few.
Dr. Tomlinson received a BS in psychology from Michigan State University in 1971, followed by an MA in philosophy in 1975, and a PhD in philosophy in 1980. In 1981 he joined the College of Human Medicine as faculty in what was then the Medical Humanities Program, which later became the Center for Ethics and Humanities in the Life Sciences.
Dr. Tomlinson has an extensive and diverse record of publication in bioethics, addressing issues in clinical care, medical and scientific research and health policy. This work has been supported by numerous external grants, including funding from the National Institutes for Health. In addition to his scholarly work, he has also provided consultations to hospitals in Michigan and elsewhere, advising on the care of individual patients and on ethics-related hospital policies and practices. Under Dr. Tomlinson’s leadership, the Center developed clinical ethics services to assist ethics committees at Sparrow Health System, McLaren-Lansing, and elsewhere in Michigan and the region.
In other roles within the university, Dr. Tomlinson served as the Director of the Interdisciplinary Program in Health and Humanities in the College of Arts and Letters, and as dissertation director for a number of doctoral students in Philosophy.
Photo: Dr. Tomlinson (left) and Center Assistant Director Libby Bogdan-Lovis share a laugh at his retirement celebration in May. Photo by Xiaoying Chen.
In April, an intriguing study drew a lot of media attention… and a swarmofbioethicists.
Reported in the New York Times and other media outlets, the study by Zvonimir Vrselja and colleagues used a preservative solution and other ingredients to mimic blood flow in the disembodied brains of four pigs (presumed dead), beginning four hours after the pigs had been slaughtered. They discovered that neurons and other brain cells had resumed metabolic activity, and that individual neurons could carry a signal. (For a lay-friendly account, see Reardon 2019.)
This may be a line of research with tremendous potential. At the modest end the range, it could lead to discovering ways to prevent or reduce irreversible brain damage and death, supplementing or improving techniques already in use, such as hypothermia protocols.
But at the other end, it raises the prospect of reanimating parts of the brain that have “died”; or maybe the whole brain itself. Could raising the dead become common-place in another decade—no longer a miracle?
Could the brain dead be raised from the dead?
It might seem the answer to this question is yes. Following the Uniform Laws Commission recommendation, Michigan like all other states allows that death can be declared under two conditions:
An individual who has sustained either of the following is dead:
(a) Irreversible cessation of circulatory and respiratory functions.
(b) Irreversible cessation of all functions of the entire brain, including the brain stem.
If Vrselja and other researchers eventually develop the ability to reanimate a whole brain, and inside a skull rather than a vat, would this make whole brain death always reversible? At least so long as the rest of the body is functional enough to sustain the brain?
It might seem the answer is “yes.” The reanimated brain would have a full complement of neurons, capable of communicating with one another, and presumably then capable of the consciousness found in any healthy human brain. The functions of the brain would have been restored.
Presuming this is possible, such a prospect raises tremendous challenges to the ethical conduct of research leading up to such an achievement, which is a focus of concern for Farahany and colleagues. We might be creating or experimenting on brains (both human and non-human) capable of consciousness, and perhaps of suffering, but with no means of communicating that to the researchers.
But would the achievement really mean that whole brain death would no longer be an acceptable criterion for death?
I think the answer is no. Whole brain death marks the death of the person, not merely the death of the brain. And it’s the death of the person that matters—to that person, and to those around them.
It will in one sense be “my” brain that has been reanimated, and it will be occupying my body. But it will be “my” brain only in the sense of being causally continuous with my brain when I was still in my senses.
It most certainly will no longer be me. Assume that my brain has in fact died, with all or most of its cells and synapses no longer functioning. On what basis could my consciousness, preferences, memories, and many characteristic failings be recovered? Consciousness is most certainly not located in any specific part of the brain, or any particular type of neuron. It is a global, network phenomenon. With the death of my brain, my network has gone down.
The brain that is recovered may have the capacity to build a network of its own. But it won’t be mine.
Yes, they may be able to revive Porky the Pig’s brain one day. But it won’t be the Porky we know.
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.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, June 6, 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.
Center Professor Dr. Tom Tominson and co-author Raymond De Vries have an article in the March-April 2019 issue of Ethics & Human Research, “Human Biospecimens Come from People.” The issue’s theme is “The Scientific Value and Validity of Research.”
Abstract: Contrary to the revised Common Rule, and contrary to the views of many bioethicists and researchers, we argue that broad consent should be sought for anticipated later research uses of deidentified biospecimens and health information collected during medical care. Individuals differ in the kinds of risk they find concerning and in their willingness to permit use of their biospecimens for future research. For this reason, asking their permission for unspecified research uses is a fundamental expression of respect for them as persons and should be done absent some compelling moral consideration to the contrary. We examine three moral considerations and argue that each of them fails: that there is a duty of easy rescue binding on all, that seeking consent creates a selection bias that undermines the validity of biospecimen research, and that seeking and documenting consent will be prohibitively expensive.
The full text is available online via Wiley Online Library (MSU Library or other institutional access may be required to view this article).
Whether by chipping away at the diseases of aging one-by-one, or by altering the fundamental biology of aging, medical research seems to be reaching for one over-arching goal: indefinitely extending the human lifespan. Living a longer, healthy life seems like an unqualified good. 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. Dr. Tomlinson will be explaining some doubts, from both the individual and societal points of view.
Join us for Dr. Tomlinson’s lecture on Wednesday, February 13, 2019 from noon until 1 pm in person or online.
Tom Tomlinson was the Director of the Center for Ethics and Humanities in the Life Sciences from 2000-Fall 2018, has written and spoken on a wide variety of bioethical issues since 1981, and has provided clinical ethics consultation services for a number of hospitals in Michigan. He received his PhD in Philosophy from MSU in 1980, and is happy to have mentored students who have embarked on successful careers in bioethics. This talk marks the beginning of a possible book project tentatively titled The Lure of Immortality.
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.
What does it mean to declare brain death in the clinical setting? How does the language we use surrounding death complicate these situations? What beliefs and philosophies exist regarding what constitutes the death of a person?
Episode 11 of No Easy Answers in Bioethics is now available! This episode features Center for Ethics and Humanities in the Life Sciences faculty members Dr. Devan Stahl and Dr. Tom Tomlinson. They discuss the above questions and more from both clinical ethics and philosophical perspectives. They go over the history of how brain death came to be defined in the United States, and discuss some cases in the news from recent years.
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—clinical ethics, evidence-based medicine, health policy, medical education, neuroethics, shared decision-making, and more. Episodes are hosted by H-Net: Humanities and Social Sciences Online.
It’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.
Should 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.
Female 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.
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.
Continue reading below for a list of recent journal articles from Center faculty, including online first publications. MSU Library or other institutional access may be required to view these articles.
Recently assigned an issue
Stahl D. Patient reflections on the disenchantment of techno-medicine. Theoretical Medicine and Bioethics. December 2018;39(6):499-513. Available online November 1, 2018. View full text via Springer Link.
Cabrera LY, Bittlinger M, Lou H, Müller S, Illes J. Reader comments to media reports on psychiatric neurosurgery: past history casts shadows on the future. Acta Neurochirurgica. December 2018;160(12):2501-2507. Available online October 24, 2018. View full text via Springer Link.
Fleck LM. Healthcare Priority-Setting: Chat-Ting Is Not Enough; Comment on “Swiss-CHAT: Citizens Discuss Priorities for Swiss Health Insurance Coverage”. International Journal of Health Policy and Management. October 2018;7(10):961-963. Available online July 28, 2018. View full text via IJHPM.
Zhuang J, Bresnahan M, Zhu Y, Yan X, Bogdan-Lovis E, Goldbort J, Haider S. The impact of coworker support and stigma on breastfeeding after returning to work. Journal of Applied Communication Research. 2018;46(4):491-508. Available online July 19, 2018. View full text via Taylor & Francis Online.
Online first
Cabrera LY, Brandt M, McKenzie R, Bluhm R. Comparison of philosophical concerns between professionals and the public regarding two psychiatric treatments. AJOB Empirical Bioethics. Available online November 6, 2018. View full text via Taylor & Francis Online.
Bluhm R, Cabrera LY. It’s Not Just Counting that Counts: a Reply to Gilbert, Viaña, and Ineichen. Neuroethics. Available online October 27, 2018. View full text via Springer Link.
De Vries RG, Ryan KA, Gordon L, Krenz CD, Tomlinson T, Jewell S, Kim SYH. Biobanks and the Moral Concerns of Donors: A Democratic Deliberation. Qualitative Health Research. Available online August 10, 2018. View full text via SAGE Journals.
Cabrera LY, Goudreau J, Sidiropoulos C. Critical appraisal of the recent US FDA approval for earlier DBS intervention. Neurology. 2018. Available online June 13, 2018. View full text via Neurology.
Zhuang J, Bresnahan MJ, Yan X, Zhu Y, Goldbort J, Bogdan-Lovis E. Keep Doing the Good Work: Impact of Coworker and Community Support on Continuation of Breastfeeding. Health Communication. Available online May 17, 2018. View full text via Taylor & Francis Online.
Jennifer 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.
Center Professor Dr. Tom Tomlinson has a new commentary in the September 2018 American Journal of Bioethics. In “Getting Off the Leash,” Dr. Tomlinson discusses “digital medicines” and what such technologies mean for patient privacy. He asks questions such as: do patients have a right to deceive their clinicians? Why would patients be deceptive?
The full text is available via Taylor & Francis Online (MSU Library or other institutional access may be required to view this article).
It was good news to learn last month that the “Golden State Killer” had at last been identified and apprehended. A very evil man gets what he deserves, and his victims and their families get some justice.
The story of how he was found, however, raised concerns in some quarters. The police had a good DNA sample from the crime scenes, which with other evidence supported the conclusion that the crimes were committed by the same person. But whose DNA was that? Answering that question took some clever detective work. Police uploaded the DNA files to a public genealogy website, GEDmatch, which soon reported other users of GEDmatch who were probably related to the killer. More ordinary police work did the rest.
Most of the concern was over the fact that the police submitted the DNA under a pseudonym, in order to make investigative use of a database whose members had signed up and provided their DNA only for genealogical purposes.
Image description: a black and white photo of the panopticon inside of Kilmainham Gaol in Dublin, Ireland. Image source: Craig Sefton/Flickr Creative Commons.
My interest in this story, however, is the way it both feeds and undermines a common narrative about our DNA—that it is uniquely identifying, and that therefore any uses of our DNA pose special threats to our privacy. As The New York Times expressed this idea, “it is beginning to dawn on consumers that even their most intimate digital data—their genetic profiles—may be passed around in ways they never intended.”
It’s true that a sample of DNA belongs uniquely to a particular individual. But the same is true of a fingerprint, a Social Security number, or an iris. More importantly, by themselves none of these pieces of information reveals who that unique individual is.
As the Golden State Killer story illustrates, it’s only when put in the context of other information that any of these admittedly unique markers becomes identifying. If the GEDmatch database contained nothing but genetic profiles, you could determine which genomes the killer was related to. But you’d have no idea who those genomes belonged to, and you’d be no closer to finding the killer.
Although an individual genome can’t by itself be identifying, it can provide a link that ties together different information sources which include that genome. It can then be that collection that points to an individual, or narrows the list of possibilities to increase the odds of identification, and the threats to privacy. Imagine the state police maintains a database of forensic DNA linked to records of criminal convictions, and provides that database to criminologists, stripped of any names or other direct identifiers. Imagine as well that one of the hospitals provides researchers with DNA from their patients along with their de-identified medical records (which can include patients’ age, race, first 3 ZIP numbers, and other demographic information).
If we put those together we can do some interesting research: use the DNA link to identify those who both committed various crimes and had a psychiatric history, so we can compare them to convicted felons without a psychiatric history.
But now it may take very little additional information to identify someone in that combined database and invade their privacy. If I’m a researcher (or hacker) who knows that my 56-year-old neighbor was convicted of assault, I can now also find out whether he has a record of psychiatric illness—and a lot more besides. What he had thought private, is no longer so.
The point of this somewhat fanciful example is that as more information is collected about us, from more sources, the threats to our privacy will increase, even if what’s contained in individual sources offers little or no chance of identification.
For this reason, the prospect of merging various data sources for “big data” health research will challenge the current research regulatory framework. Under both the current and the new rules (which haven’t yet gone into effect), the distinction between identifiable and non-identifiable research subjects is critical. Research using information that can be linked to an individual’s identity requires that person’s consent. To avoid this requirement, research data must be “de-identified”. De-identification is the regulatory backbone on which much of the current “big data” research relies, allowing the appropriation of patient medical records and specimens for use in research without consent; and it provides the regulatory basis for uploading the data collected in NIH-supported research into a large NIH-sponsored database, the database of Genotypes and Phenotypes (dbGaP), which most NIH-supported genomic studies are required to do. Data from dbGaP can then be used by other researchers to address other research questions.
The possibilities of merging such “de-identified” databases together for research purposes will only increase, including facial recognition databases being collected online and on the street. As the mergers increase, it will become more difficult to claim that the people represented in those databases remain non-identifiable. As Lynch and Meyer point out in the Hastings Center Report, at this point there will be two choices. We can require that all such research will need at least broad consent, which will have to be reaffirmed every time a person’s data is used in new contexts that make identification possible. Or we will have to fundamentally reassess whether privacy can play any role at all in our research ethics, as the very idea of “privacy” evaporates in the panopticon of everyday surveillance.
Tom Tomlinson, PhD, is Director and Professor in the Center for Ethics and Humanities in the Life Sciences in the College of Human Medicine, and Professor in the Department of Philosophy at Michigan State University.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, July 12, 2018. 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.
This month the Center for Ethics is wishing a happy retirement to Dr. Tom Tomlinson. Dr. Tomlinson, Professor in the Center and the Department of Philosophy, served as Center Director for eighteen years, from 2000-2018. Under his guidance the Center’s core faculty members directed their ongoing attention to understanding varied aspects of the human condition including chronic illness, birthing, disability, international research ethics, spirituality, and neuroethics, to name only a few.
This post is a part of our 
Join us for Dr. Tomlinson’s lecture on Wednesday, February 13, 2019 from noon until 1 pm in person or online.
What does it mean to declare brain death in the clinical setting? How does the language we use surrounding death complicate these situations? What beliefs and philosophies exist regarding what constitutes the death of a person?
It’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 
Female Cosmetic Genital Surgery: Social and Ethical Considerations
Jennifer 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?”
MSU Bioethics 