About The Lab
The Jenny Blumenthal-Barby Lab research focuses primarily on the ethical issues raised by research on human judgment and decision-making (e.g., decisional biases and heuristics, behavioral economics).
Primary Investigator
Jenny Blumenthal-Barby, Ph.D., M.A. is the Cullen Professor of Medical Ethics and Associate Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine.
Current Projects
Philosophical Bioethics Consortium and Web Hub
Blumenthal-Barby, Ph.D., M.A. from the Center for Medical Ethics and Health Policy developed a Philosophical Bioethics Hub with support from the Greenwall Foundation and Consortium partners at the Oxford Uehiro Centre for Practical Ethics, Georgetown’s Kennedy Institute of Ethics, and NYU’s Center for Bioethics. The Hub website includes: Greenwall Philosophical Bioethics Seminar Series, normative-empirical bioethics tookit, events and web-based lecture series in philosophy and bioethics.
Houston/Galveston Philosophical Bioethics Network
The Houston/Galveston Network is comprised of philosophers working at the intersection of philosophy and bioethics. The network is a collaborative between philosophy faculty and post-docs in The BCM Center for Medical Ethics and Health Policy, Rice University’s Philosophy Department, and UTMB’s Institute for Bioethics & Health Humanities.
The network meets monthly for works-in-progress sessions. Contact Dr. Blumenthal-Barby at jennifer.blumenthal-barby@bcm.edu if you are a philosopher (faculty or post-doc) in Houston/Galveston interested in joining the group.
Recent topics have included consciousness and value, addiction and blameworthiness, the moral authority of experience, fetal pain and personhood—among others.
Philosophy Book Reading Group
The group reads and discusses (through five-six meetings) one new book in philosophy with relevance to bioethics each semester (fall, spring).
Books read so far include:
- Fall 2022 Epiphanies: an ethics of experience by Sophie Grace Chappell (Oxford University Press, 2022)
- Spring 2022: Ways to be Blameworthy: Rightness, Wrongness, and Responsibility by Elinor Mason (Oxford University Press, 2019)
- Fall 2021: Morality by Degrees: Reasons Without Demands by Alastair Norcross (Oxford University Press, 2020)
Semi-Annual Philosophical Bioethics Workshop
This workshop is sponsored by the Greenwall Foundation. View program agendas from the past workshops for details:
Philosophical Bioethics Scholarship
Check out recent philosophical bioethics scholarship from the center’s faculty, post-docs, and staff:
Kostick-Quenet K, Lang B, Smith J, Hurley M, Blumenthal-Barby JS. Trust Criteria for Artificial Intelligence in Health: Normative and Epistemic Considerations. Journal of Medical Ethics. 2023 Nov 18:jme-2023-109338. doi: 10.1136/jme-2023-109338. Epub ahead of print. PMID: 37979976.
Lang, Benjamin H., Blumenthal-Barby, J.S. Nyholm, Sven. Responsibility Gaps and Black Box Healthcare AI: Shared Responsibilisation as a Solution. DISO 2, 52 (November 16, 2023). https://doi.org/10.1007/s44206-023-00073-z
Blumenthal-Barby J. Ethics of speculation. J Med Ethics. 2023 Aug;49(8):525. doi: 10.1136/jme-2023-109429. PMID: 37487621.
Kitts, M. Throwing the Embryos out with the Bathwater? A Novel Evaluation of the Value of Embryos. J Appl Philos. July 2023. https://onlinelibrary.wiley.com/doi/10.1111/japp.12672
Smith J, Blumenthal-Barby J. Call for moral recognition as part of paediatric assent. J Med Ethics. 2023 Jul;49(7):481-482. doi: 10.1136/jme-2023-109013. Epub 2023 May 5. PMID: 37147114; PMCID: PMC10583811.
Blumenthal-Barby, JS. The End of Personhood, American Journal of Bioethics (target article), 2023 Jan 12;1-10, online ahead of print.
Blumenthal-Barby JS. An AI Bill of Rights: Implications for Health Care AI and Machine Learning-A Bioethics Lens. American Journal of Bioethics, 23(1), 2023: 4-6.
Blumenthal-Barby JS. Theoretical vs. Practical Reasons: Derek Parfit and Bioethics, American Journal of Bioethics, 22(9), 2022: 1-3.
Largent EA, Clapp J, Blumenthal-Barby JS, Grady C, McGuire AL, Karlawish J, Grill JD, Stites SD, Peterson A. Deciding with Others: Interdependent Decision Making. Hastings Center Report, 52(6), 2023: 23-32. https://pubmed.ncbi.nlm.nih.gov/36537275/
Nelson R, Fernandez-Lynch H, Moore B, Waggoner M, Blumenthal-Barby JS. Bioethics and the Moral Authority of Experience. American Journal of Bioethics, October, 2022; 1-13. doi: 10.1080/15265161.2022.2127968.
Blumenthal-Barby JS. Bringing Nuance to Autonomy-Based Considerations in Vaccine Mandate Debates, in Ethics and the COVID Pandemic: Lessons for the Future edited by Julian Savulescu (Oxford University Press, 2022), https://academic.oup.com/book/45841/chapter-abstract/400756061?redirectedFrom=fulltext.
Omelianchuk, A. Can double‐effect reasoning justify lethal organ donation? Bioethics, Volume 36, Issue 6, Page 648-654, April 2022.
Omelianchuk, A. The inviolateness of life and equal protection: a defense of the dead-donor rule. Theor Med Bioeth 43, 1–27, March 2022. https://doi.org/10.1007/s11017-022-09557-4
Bibler TM. Responding Well to Spiritual Worldviews: A Taxonomy for Clinical Ethicists. HEC Forum. 2022 Jan 7. doi: 10.1007/s10730-021-09468-2. Epub ahead of print. PMID: 34994915.
Nelson R, Moore B, Blumenthal-Barby JS. Pediatric Authenticity: Hiding in Plain Sight. Hastings Center Report, 52(1), 2022:42-50.
Omelianchuk, A. Brain Death as the End of a Human Organism as a Self-moving Whole. The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine, Volume 46, Issue 5, October 2021, Pages 530–560, https://doi.org/10.1093/jmp/jhab021
Blumenthal-Barby JS, Sean Aas, Dan Brudney, Jessica Flanigan, Matthew Liao, Alex London, Wayne Sumner, Julian Savulescu. The Place of Philosophy in Bioethics Today. American Journal of Bioethics (target article), 2021 June; online ahead of print.
Blumenthal-Barby J, Ubel PA. Supported Decision Making: A Concept at the Margins vs. Center of Autonomy? Am J Bioeth. 2021 Nov; 21(11):43-44. doi: 10.1080/15265161.2021.1981033. PMID: 34710007.
Moore B, Nelson RH, Ubel PA, Blumenthal-Barby J. Two Minds, One Patient: Clearing up Confusion About "Ambivalence". Am J Bioeth. 2021 Feb 23:1-18. doi: 10.1080/15265161.2021.1887965. Epub ahead of print. PMID: 33620300.
Blumenthal-Barby, J. S. 2021. Good ethics and bad choices: The relevance of behavioral economics for medical ethics. Cambridge, MA: MIT Press.
RH Nelson & LP Francis. (2020). Intellectual Disability and Justice in a Pandemic. Kennedy Institute of Ethics Journal 30(3-4): 319-338.
RH Nelson. (2020). A Critique of the Neurodiversity View. Journal of Applied Philosophy 38(2): 335-347.
Malek J. Reed on expressivism at the end of life: a bridge too far. J Med Ethics. 2020 Aug;46(8):552. doi: 10.1136/medethics-2020-106533. Epub 2020 Jul 14. PMID: 32665255.
Taylor M. Conceptual challenges to the harm threshold. Bioethics. 2020 Jun;34(5):502-508. doi: 10.1111/bioe.12686. Epub 2019 Nov 7. PMID: 31697399.
Moore B, Nelson RH. Moral Intimacy, Authority, and Discretion. Am J Bioeth. 2020 Feb;20(2):66-68. doi: 10.1080/15265161.2019.1701743. PMID: 31990252.
Peterson A, Kostick K, O’Brien K, Blumenthal-Barby JS. Seeing Minds in Disorders of Consciousness Patients. Brain Injury. 2019;1-9.
Nelson RH, Malek J. Clinical Ethics Expertise: Beyond Justified Normative Recommendations? Am J Bioeth. 2019 Nov;19(11):82-84. doi: 10.1080/15265161.2019.1665744. PMID: 31661422.
Shannon CM, Coverdale JH, Gordon M, Blumenthal-Barby JS. Clinical Ultimatums: Coercion as Subjection. Am J Bioeth. 2019 Sep;19(9):54-56. doi: 10.1080/15265161.2019.1630509. PMID: 31419195.
Blumenthal-Barby JS, Ubel PA. In Defense of Denial: Difficulty Knowing When Beliefs Are Unrealistic and When Unrealistic Beliefs Are Bad. American Journal of Bioethics 18(9), 2018:4-15.
Blumenthal-Barby JS, Opel DJ. Nudge or Grudge? Choice Architecture and Parental Decision Making. Hastings Center Report, 48(2), 2018:33-39.
Blumenthal-Barby J. The End of Personhood [published online ahead of print, 2023 Jan 12]. Am J Bioeth. 2023;1-10. doi:10.1080/15265161.2022.2160515
Bobier C, Rodger D, Hurst DJ, Omelianchuk A. In defense of xenotransplantation research: Because of, not in spite of, animal welfare concerns [published online ahead of print, 2022 Dec 27]. Xenotransplantation. 2022;e12791. doi:10.1111/xen.12791
Choice architecture refers to how the presentation of choices may influence decision-making and is a technique that has been implemented in public and private policy domains. The way in which options are categorized and then presented to a decision-maker is an example of presenting options in a way that influences choice. Related to health care, for example, nations that require citizens to opt-out of organ transplant donation have a significantly higher organ-donor rate than nations where the citizens must affirmatively choose to take part (opt-in). Another technique suggested is laying out various outcomes of a decision in a way that is easy for the choice-maker to understand. The literature on choice architecture builds a framework to distinguish between two types of tools that choice architects can use: those that structure a choice in a certain way, and tools that make use of how options are presented to decision-makers. To illustrate, the use of a default, where the default option will lead to a more socially desirable outcome, is an example of structuring choices.
This project aims to develop empirically-informed comprehensive normative guidelines for the use of choice architecture in (1) prostate cancer treatment decision-making, and (2) decision-making about tracheostomy placement in critically ill children.
Supported by: The Greenwall Foundation, Making a Difference in Real-World Bioethics Dilemmas Grant Initiative
Publications
Blumenthal-Barby J, Ubel PA. Supported Decision Making: A Concept at the Margins vs. Center of Autonomy?. Am J Bioeth. 2021;21(11):43-44. doi:10.1080/15265161.2021.1981033
Trenaman L, Jansen J, Blumenthal-Barby J, et al. Are We Improving? Update and Critical Appraisal of the Reporting of Decision Process and Quality Measures in Trials Evaluating Patient Decision Aids. Med Decis Making. 2021;41(7):954-959. doi:10.1177/0272989X211011120
Kostick KM, Blumenthal-Barby JS. Avoiding "toxic knowledge": the importance of framing personalized risk information in clinical decision-making. Per Med. 2021;18(2):91-95. doi:10.2217/pme-2020-0174
Blumenthal-Barby, JS. Good Ethics and Bad Choices: The Relevance of Behavioral Economics for Medical Ethics (in production, MIT Press, forthcoming in 2020). [book]
Blumenthal-Barby JS. On the Ethical Criteria for Health-Promoting Nudges: The Importance of Conceptual Clarity. American Journal of Bioethics, 19(5), 2019:66-68.
Blumenthal-Barby JS, Ubel PA. Truth Be Told: Not All Nudging Is Bullshit. Journal of Medical Ethics, 44(8), 2018:547.
Shannon CM, Coverdale JH, Gordon M, Blumenthal-Barby JS. Clinical Ultimatums: Coercion as Subjection. American Journal of Bioethics, 19(9), 2019:54-56.
Blumenthal-Barby JS, Ubel PA. In Defense of Denial: Difficulty Knowing When Beliefs Are Unrealistic and When Unrealistic Beliefs Are Bad. American Journal of Bioethics 18(9), 2018:4-15.
Blumenthal-Barby JS, Opel DJ. Nudge or Grudge? Choice Architecture and Parental Decision Making. Hastings Center Report, 48(2), 2018:33-39.
Won T, Chacko M, Blumenthal-Barby JS. Paid Protection?: Ethics of Incentivized Long-Acting Reversible Contraception in Adolescents with Alcohol and Other Drug Use, Journal of Medical Ethics 43(3), 2017:182-187.
Loewenstein, G., Hagmann, D., Schwartz, J., Ericson, K., Kessler, J. B., Bhargava, S., Blumenthal-Barby, J., D'Aunno, T., Handel, B., Kolstad, J., Nussbaum, D., Shaffer, V., Skinner, J., Ubel, P., Zikmund-Fisher, B. J. (2017). A Behavioral Blueprint for Improving Health Care Policy. Behavioral Science & Policy, 5(1), 2017:53-66.
Blumenthal-Barby JS, Shipchandler Z, Kaplan J. An Ethical Framework for Public Health Nudges: A Case Study of Incentives as Nudges for Vaccination in Rural India. Nudging Health: Health Law and Behavioral Economics, Johns Hopkins University Press (2016): 112-123.
Blumenthal-Barby J, Loftis L, Cummings CL, Meadow W, Lemmon M, Ubel PA, McCullough L, Rao E, Lantos JD. Should Neonatologists Give Opinions Withdrawing Life-sustaining Treatment? Pediatrics 138(6), 2016:1-7.
Blumenthal-Barby J. Biases and Heuristics in Decision Making and Their Impact on Autonomy. Am J Bioeth. 16(5), 2016: 5-15.
Blumenthal-Barby JS, Denise L, Volk R. Towards Ethically Responsible Choice Architecture in Prostate Cancer Treatment Decision Making. CA: Cancer J For Clin. 65(4), 2016: 257-60.
Volk R, Kinsman G, Le Y, Swank P, Blumenthal-Barby JS, McFall S, Byrd T, Mullen P, Cantor S. Designing Normative Messages About Active Surveillance for Men With Localized Prostate Cancer. J Health Commun. 20(9), 2016: 1014-20.
Blumenthal-Barby JS, Naik A. In Defense of Nudge-Autonomy Compatibility. American Journal of Bioethics 15(10), 2015: 45-47
Presentations
“The Ethics of Nudging People Towards Research Participation” (panel presentation)
Public Responsibility in Medicine and Research (PRIM&R)
Advancing Ethical Research (AER) Conference
December 2020 (virtual due to pandemic)
“The Ethical Permissibility of Nudging in Critical Care” (panel presentation)
American Society for Bioethics and Humanities Annual Meeting
Baltimore (virtual due to pandemic), October 2020
“Medical Decision Making and Ethics: How You Influence Your Patients”
American College of Cardiology Texas Chapter Annual Meeting
October 2020 (virtual due to pandemic)
“The Importance of a More Nuanced Understanding of Hope, Unrealistic Optimism, Denial”
Rocky Mountain Ethics Congress (RoME)-International Ethics Conference
Boulder, August 2017
“Choice Architecture in Pediatric Critical Care—A Critical Analysis”
American Society for Bioethics and Humanities Annual Meeting
Washington D.C., October 2016
“Ethical Challenges Posed by Studies in Medical Decision-Making and Behavioral Economics”
Baylor St. Luke’s Medical Center, Medicine Grand Rounds, June 2019
Baylor St. Luke’s Medical Center, Internal Medicine Grand Rounds, June 2018
Texas Children’s Hospital Pediatric Neurology Grand Rounds, February 2018
Intersections: Nudge Ethics, Decision Science, Behavioral Economics
University of Pennsylvania
Center for Health Incentives & Behavioral Economics/Health Policy Seminar
October 2019
Ethics and Philosophy in Choice Architecture
Philosophical Bioethics Workshop (Organizer and Lead: with Sean Aas, Dan Brudney, Jessica Flanigan, Matthew Liao, Alex London, Julian Savulescu, Wayne Sumner)
Houston, June 2019
Exploring the Ethics of Nudges in Medicine
University of Utah Philosophy Department, Colloquium Series (Grad Student Selection)
January 2019
Exploring the Ethics of Nudges
Aarhus University (Denmark), Workshop on Nudging in Public Health
November 2018
Good Ethics, Bad Choices: The Relevance of Behavioral Economics for Medical Ethics
University of Stirling (Scotland) Behavioral Science Center
[Invited, September 2018]
Biases and Heuristics in Clinical Decision Making and Their Impact on Autonomy
Children’s Mercy Hospital Bioethics Center, Kansas City
February 2018
What to Do When Patients Make Bad Decisions (with Peter Ubel)
Center for Behavioral Economic Health Research (CBEHR) at the University of Florida
January 2018
Hope, Unrealistic Optimism, and Denial
NYU Center for Bioethics, New York
January 2017
Autonomous Decisions and the Ethics of Nudging (Medicine Grand Rounds)
Hope, Unrealistic Optimism, and Denial (Bioethics Center Talk)
University of Pittsburgh, Center for Bioethics & Health Law (Visiting Professor)
March 2017
Medical Decision Making and Behavioral Economics: How You Influence Your Patients
Bertini Ethics Lecture at St. Joseph Medical Center
September 2017
Smart contracts constitute a novel privacy-by-design tool and critical pivot point around which a larger system of technologies and policies may be symbiotically developed to help protect sensitive digital phenotyping (DP) data, guided by ethical concerns for individual patient rights and future impacts. This research will systematically identify ethical and technical challenges as well key opportunities for near-term collaboration toward the responsible development of patient-led smart contracts to enhance transparency, patient control and self determination over how DP data is shared. This study is thus responsive to the vision of NIH to foster collaborations that can modernize biomedical data ecosystems using the latest data science technologies
Funded by the National Institute of Mental Health (NIMH) /NIH Office of the Director
The development and efficacy-testing of a holistic, personalized, electronically integrated clinical decision support system for left-ventricular assist device candidates will help to ensure that heart failure patients receive tailored treatments that lead to optimal and values-based outcomes. Our study involves utilization of an AI/machine learning system that predicts personalized risks using big data. Specifically, it applies the most advanced personalized risk prediction technologies and decision support available to make sure that evidence about cardiac outcomes is used by both patients and clinicians in the service of shared decision making that leads to more informed and value-concordant health decisions. The impact of this personalized approach to clinical decision making addresses the urgent need to better identify and respond to the specific and dynamic nature of patient needs in seeking treatment for advanced HF.
We will do this by updating and integrating a validated online risk prediction and communication tool, the Heart Mate 3 Risk Score calculator developed by Dr. Mandeep Mehra and colleagues at Brigham and Women's Hospital, with our efficacy-tested decision aid (Deciding Together) for LVAD.
This five-year project builds on 6 years of research on the development, implementation and dissemination of LVAD decision support and a decade of research into accurate risk prediction models for LVAD.
Supported by: R01 HS027784, Agency for Healthcare Research and Quality
Publications
Kristin M. Kostick-Quenet, Benjamin Lang, Natalie Dorfman, Jerry Estep, Mandeep R. Mehra, Arvind Bhimaraj, Andrew Civitello, Ulrich Jorde, Barry Trachtenberg, Nir Uriel, Holland Kaplan, Eleanor Gilmore-Szott, Robert Volk, Mahwash Kassi, J.S. Blumenthal-Barby. Patients’ and physicians’ beliefs and attitudes towards integrating personalized risk estimates into patient education about left ventricular assist device therapy. Patient Education and Counseling, Volume 122, 2024, 108157, ISSN 0738-3991. https://doi.org/10.1016/j.pec.2024.108157.
Kostick-Quenet K, Lang B, Smith J, Hurley M, Blumenthal-Barby JS. Trust Criteria for Artificial Intelligence in Health: Normative and Epistemic Considerations. Journal of Medical Ethics (November 18, 2023). https://doi.org/10.1136/jme-2023-109338.
Lang, Benjamin H., Blumenthal-Barby, J.S. Nyholm, Sven. Responsibility Gaps and Black Box Healthcare AI: Shared Responsibilization as a Solution. DISO 2, 52 (November 16, 2023). https://doi.org/10.1007/s44206-023-00073-z.
Hurley, Meghan E., Benjamin H. Lang, and Jared N. Smith. “Therapeutic Artificial Intelligence: Does Agential Status Matter?” The American Journal of Bioethics 23, no. 5 (May 4, 2023): 33–35. https://doi.org/10.1080/15265161.2023.2191037.
Kostick-Quenet, Kristin M., Benjamin Lang, Natalie Dorfman, and J. S. Blumenthal-Barby. “A Call for Behavioral Science in Embedded Bioethics.” Perspectives in Biology and Medicine 65, no. 4 (September 2022): 672–79. https://doi.org/10.1353/pbm.2022.0059.
Blumenthal-Barby, J., Lang, B., Dorfman, N., Kaplan, H., Hooper, W. B., & Kostick-Quenet, K. (2022). "Research on the Clinical Translation of Health Care Machine Learning: Ethicists’ Experiences on Lessons Learned." American Journal of Bioethics, 22(5), 1–3. doi: 10.1080/15265161.2022.2059199.
Kostick, K.M., Cohen, G., Gerke, S., Lo, B., Antaki, J., Movahedi, F., Njah, H., Schoen, L., Estep, J. & Blumenthal-Barby, J.S. (2022). "Mitigating Racial Bias in Machine Learning." Special issue of the Journal of Law, Medicine & Ethics, 50(1), 92-100. doi:10.1017/jme.2022.13
Kostick, K.M., & Blumenthal-Barby, J.S. (2021). "Avoiding “Toxic Knowledge”: The importance of framing personalized risk information in clinical decision-making." Personalized medicine, 18(2), 91–95. https://doi.org/10/2217/pme-2020-0174
Completed Projects
Choice architecture refers to how the presentation of choices may influence decision-making and is a technique that has been implemented in public and private policy domains. The way in which options are categorized and then presented to a decision-maker is an example of presenting options in a way that influences choice. Related to health care, for example, nations that require citizens to opt-out of organ transplant donation have a significantly higher organ-donor rate than nations where the citizens must affirmatively choose to take part (opt-in). Another technique suggested is laying out various outcomes of a decision in a way that is easy for the choice-maker to understand. The literature on choice architecture builds a framework to distinguish between two types of tools that choice architects can use: those that structure a choice in a certain way, and tools that make use of how options are presented to decision-makers. To illustrate, the use of a default, where the default option will lead to a more socially desirable outcome, is an example of structuring choices.
This project aims to develop empirically-informed comprehensive normative guidelines for the use of choice architecture in (1) prostate cancer treatment decision-making, and (2) decision-making about tracheostomy placement in critically ill children.
Supported by: The Greenwall Foundation, Making a Difference in Real-World Bioethics Dilemmas Grant Initiative
Publications
Blumenthal-Barby J, Ubel PA. Supported Decision Making: A Concept at the Margins vs. Center of Autonomy?. Am J Bioeth. 2021;21(11):43-44. doi:10.1080/15265161.2021.1981033
Trenaman L, Jansen J, Blumenthal-Barby J, et al. Are We Improving? Update and Critical Appraisal of the Reporting of Decision Process and Quality Measures in Trials Evaluating Patient Decision Aids. Med Decis Making. 2021;41(7):954-959. doi:10.1177/0272989X211011120
Kostick KM, Blumenthal-Barby JS. Avoiding "toxic knowledge": the importance of framing personalized risk information in clinical decision-making. Per Med. 2021;18(2):91-95. doi:10.2217/pme-2020-0174
Blumenthal-Barby, JS. Good Ethics and Bad Choices: The Relevance of Behavioral Economics for Medical Ethics (in production, MIT Press, forthcoming in 2020). [book]
Blumenthal-Barby JS. On the Ethical Criteria for Health-Promoting Nudges: The Importance of Conceptual Clarity. American Journal of Bioethics, 19(5), 2019:66-68.
Blumenthal-Barby JS, Ubel PA. Truth Be Told: Not All Nudging Is Bullshit. Journal of Medical Ethics, 44(8), 2018:547.
Shannon CM, Coverdale JH, Gordon M, Blumenthal-Barby JS. Clinical Ultimatums: Coercion as Subjection. American Journal of Bioethics, 19(9), 2019:54-56.
Blumenthal-Barby JS, Ubel PA. In Defense of Denial: Difficulty Knowing When Beliefs Are Unrealistic and When Unrealistic Beliefs Are Bad. American Journal of Bioethics 18(9), 2018:4-15.
Blumenthal-Barby JS, Opel DJ. Nudge or Grudge? Choice Architecture and Parental Decision Making. Hastings Center Report, 48(2), 2018:33-39.
Won T, Chacko M, Blumenthal-Barby JS. Paid Protection?: Ethics of Incentivized Long-Acting Reversible Contraception in Adolescents with Alcohol and Other Drug Use, Journal of Medical Ethics 43(3), 2017:182-187.
Loewenstein, G., Hagmann, D., Schwartz, J., Ericson, K., Kessler, J. B., Bhargava, S., Blumenthal-Barby, J., D'Aunno, T., Handel, B., Kolstad, J., Nussbaum, D., Shaffer, V., Skinner, J., Ubel, P., Zikmund-Fisher, B. J. (2017). A Behavioral Blueprint for Improving Health Care Policy. Behavioral Science & Policy, 5(1), 2017:53-66.
Blumenthal-Barby JS, Shipchandler Z, Kaplan J. An Ethical Framework for Public Health Nudges: A Case Study of Incentives as Nudges for Vaccination in Rural India. Nudging Health: Health Law and Behavioral Economics, Johns Hopkins University Press (2016): 112-123.
Blumenthal-Barby J, Loftis L, Cummings CL, Meadow W, Lemmon M, Ubel PA, McCullough L, Rao E, Lantos JD. Should Neonatologists Give Opinions Withdrawing Life-sustaining Treatment? Pediatrics 138(6), 2016:1-7.
Blumenthal-Barby J. Biases and Heuristics in Decision Making and Their Impact on Autonomy. Am J Bioeth. 16(5), 2016: 5-15.
Blumenthal-Barby JS, Denise L, Volk R. Towards Ethically Responsible Choice Architecture in Prostate Cancer Treatment Decision Making. CA: Cancer J For Clin. 65(4), 2016: 257-60.
Volk R, Kinsman G, Le Y, Swank P, Blumenthal-Barby JS, McFall S, Byrd T, Mullen P, Cantor S. Designing Normative Messages About Active Surveillance for Men With Localized Prostate Cancer. J Health Commun. 20(9), 2016: 1014-20.
Blumenthal-Barby JS, Naik A. In Defense of Nudge-Autonomy Compatibility. American Journal of Bioethics 15(10), 2015: 45-47
Presentations
“The Ethics of Nudging People Towards Research Participation” (panel presentation)
Public Responsibility in Medicine and Research (PRIM&R)
Advancing Ethical Research (AER) Conference
December 2020 (virtual due to pandemic)
“The Ethical Permissibility of Nudging in Critical Care” (panel presentation)
American Society for Bioethics and Humanities Annual Meeting
Baltimore (virtual due to pandemic), October 2020
“Medical Decision Making and Ethics: How You Influence Your Patients”
American College of Cardiology Texas Chapter Annual Meeting
October 2020 (virtual due to pandemic)
“The Importance of a More Nuanced Understanding of Hope, Unrealistic Optimism, Denial”
Rocky Mountain Ethics Congress (RoME)-International Ethics Conference
Boulder, August 2017
“Choice Architecture in Pediatric Critical Care—A Critical Analysis”
American Society for Bioethics and Humanities Annual Meeting
Washington D.C., October 2016
“Ethical Challenges Posed by Studies in Medical Decision-Making and Behavioral Economics”
Baylor St. Luke’s Medical Center, Medicine Grand Rounds, June 2019
Baylor St. Luke’s Medical Center, Internal Medicine Grand Rounds, June 2018
Texas Children’s Hospital Pediatric Neurology Grand Rounds, February 2018
Intersections: Nudge Ethics, Decision Science, Behavioral Economics
University of Pennsylvania
Center for Health Incentives & Behavioral Economics/Health Policy Seminar
October 2019
Ethics and Philosophy in Choice Architecture
Philosophical Bioethics Workshop (Organizer and Lead: with Sean Aas, Dan Brudney, Jessica Flanigan, Matthew Liao, Alex London, Julian Savulescu, Wayne Sumner)
Houston, June 2019
Exploring the Ethics of Nudges in Medicine
University of Utah Philosophy Department, Colloquium Series (Grad Student Selection)
January 2019
Exploring the Ethics of Nudges
Aarhus University (Denmark), Workshop on Nudging in Public Health
November 2018
Good Ethics, Bad Choices: The Relevance of Behavioral Economics for Medical Ethics
University of Stirling (Scotland) Behavioral Science Center
[Invited, September 2018]
Biases and Heuristics in Clinical Decision Making and Their Impact on Autonomy
Children’s Mercy Hospital Bioethics Center, Kansas City
February 2018
What to Do When Patients Make Bad Decisions (with Peter Ubel)
Center for Behavioral Economic Health Research (CBEHR) at the University of Florida
January 2018
Hope, Unrealistic Optimism, and Denial
NYU Center for Bioethics, New York
January 2017
Autonomous Decisions and the Ethics of Nudging (Medicine Grand Rounds)
Hope, Unrealistic Optimism, and Denial (Bioethics Center Talk)
University of Pittsburgh, Center for Bioethics & Health Law (Visiting Professor)
March 2017
Medical Decision Making and Behavioral Economics: How You Influence Your Patients
Bertini Ethics Lecture at St. Joseph Medical Center
September 2017
Dr. Blumenthal-Barby received two career development awards to carry out original research on the clinical and policy dilemmas arising at the intersection of ethics and decision science. The science of behavior change describes the power to influence individual and group health behaviors, which raises many ethical issues. The goal of this study is to clarify and address these ethical issues and categorize them into a set of recommendations for policymakers and researchers considering utilizing science of behavior change techniques. In addition, this research seeks to identify settings in which clinicians envision implementing science of behavior change techniques to influence their patients’ health decisions and behaviors. These results will lead to the development of ethically justified recommendations for clinicians to implement science of behavior change techniques.
Supported by: The Greenwall Foundation and The Pfizer Foundation
See Choice Architecture for related publications and presentations.
This is a research project studying disorders of consciousness (DOC) patients’ family members’ and clinical care team members’ views on consciousness and its moral significance. This research is investigating the following questions by interviewing family members and clinicians:
- What are the perceptions of consciousness regarding vegetative state (VS) and minimally conscious state (MCS) patients, as perceived by those patients' family members and clinicians. How do family members think about consciousness?
- How do VS/MCS patients' family members and clinicians perceive the significance of this consciousness. Is it better to be minimally conscious or not conscious at all? How does degree of consciousness factor into decision making about life support?
Supported by: TIRR Memorial Hermann, BCM2015-01
Publications
Peterson A, Kostick K, O’Brien K, Blumenthal-Barby JS. Seeing Minds in Disorders of Consciousness Patients. Brain Injury. 2019;1-9.
Kostick K, Kothari S, O’Brien K, Halm A, Blumenthal-Barby JS. Conceptualizations of Consciousness and Continuation of Care Among Family Members and Health Professionals Caring for Patients in a Minimally Conscious State. Disability and Rehabilitation. 2019.
Presentations
Seeing Minds in Disorders of Consciousness Patients” (lead: Andrew Peterson, w/ JBB and Kostick) American Society for Bioethics and Humanities Annual Meeting. Pittsburgh, October 2019
“Consciousness and Its Moral Significance: Perspectives of Family Members and Health Professionals Caring for Patients in a Minimally Conscious State” (KK and JBB) Neuroethics Network. Paris, France, June 2019
JBB “Consciousness and Its Moral Significance—Perspectives from Caregivers of Patients in a Minimally Conscious State” American Society for Bioethics and Humanities Annual Meeting. Kansas City, October 2017
Psychiatric genetics researchers have recently identified numerous genomic loci associated with schizophrenia, depression, autism spectrum disorder, bipolar disorder, attention deficit hyperactivity disorder, and other disorders. The identification of these genomic loci makes it possible to generate polygenic risk scores (PRS) to distinguish an individual’s risk for different psychiatric disorders compared to the general population.
The usual age of onset for most psychiatric disorders is during childhood, late adolescence, and early adulthood, with as many as 20% of children and adolescents in the U.S. diagnosed with a psychiatric disorder. Numerous studies suggest that early intervention improves clinical outcomes, however, the average duration of untreated symptoms and disorders is generally in the order of years.
Thus, there is great need for tools such as PRS to help improve the identification of children and adolescents at higher risk for psychiatric disorders. The promise of reliable PRS in mental health care and prevention is considerable, but there are critical potential ethical and policy challenges.
The long-term goal of this research is to develop ethically-justified and empirically-informed guidelines and tools to address the ethical and policy challenges raised by the use of psychiatric PRS with children and adolescents. The objective of this supplement is to identify child and adolescent psychiatrists’ knowledge, practices, attitudes, expectations, and perceived benefits and risks about the use of psychiatric PRS.
Supported by: K99/R00HG008689, grant funding by National Human Genome Research Institute of the National Institutes of Health.
Publications
Lazaro-Munoz, Munoz, K., Soda, T., Austin, J., Sanchez, C., Torgerson, L., Small, B., Storch, E., & Pereira, S. (2021). Polygenic Risk Scores in Child and Adolescent Psychiatry: U.S. Clinicians' Practices Knowledge, and Attitudes. European Neuropsychopharmacology, 51, e21–e21.
Soda, Pereira, S., Small, B. J., Torgerson, L. N., Muñoz, K. A., Austin, J., Storch, E. A., & Lázaro-Muñoz, G. (2021). Child and Adolescent Psychiatrists’ Perceptions of Utility and Self-rated Knowledge of Genetic Testing Predict Usage for Autism Spectrum Disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 60(6), 657–660.
Presentations
Polygenic Risk Scores in Child and Adolescent Psychiatry: U.S. Clinicians’ Practices, Knowledge, and Attitudes. World Congress of Psychiatric Genetics; Virtual. Lazaro-Munoz G, Munoz K, Soda T, Austin J, Sanchez C, Torgerson L, Small B, Storch E, & Pereira S (2021).
Knowledge and Perceptions of Utility by Child and Adolescent Psychiatrists are Barriers to Genetic Testing for Autism. World Congress of Psychiatric Genetics; Virtual. Soda T, Pereira S, Torgerson L, Muñoz K, Small B, Austin J, Storch E, Lázaro-Muñoz G (2020).
Genomic analysis (genome/exome sequencing and array-based measures) is helping uncover the genetic architecture of psychiatric disorders. Nevertheless, genomic testing raises complex challenges for investigators. A critical one is how to manage the increasing amount of clinically relevant findings these technologies can generate.
Over the past decade, hundreds of thousands of individuals have participated in psychiatric genomics research and in upcoming years, millions will participate in this type of research. Psychiatric genomics research has the potential to generate clinically relevant information for participants and their biological relatives.
The return of results is particularly challenging for psychiatric genomics researchers given the lack of history and ethical guidelines for offering to return results in this field, the still emerging understanding of the genetic architecture of psychiatric disorders, their multifactorial nature, and the multinational collaborations and large number of participants generally required to conduct this research. No empirical research has examined the unique challenges of returning results in the psychiatric context and no guidelines specific to PG research exist.
The long-term goal of our research program is to develop an ethically-justified and empirically-informed framework for offering to return clinically relevant findings to participants in PG research. The objective of this project, which is the first step in pursuit of that goal, is to examine the attitudes, perspectives, experiences, and perceived barriers of PG researchers as principal gatekeepers regarding the return and management of clinically relevant findings.
Supported by: R00HG008689, Grant funding from National Human Genome Research Institute of the National Institutes of Health
Publications
Lázaro-Muñoz, Torgerson, L., & Pereira, S. (2021). Return of results in a global survey of psychiatric genetics researchers: practices, attitudes, and knowledge. Genetics in Medicine, 23(2), 298–305.
Kostick, Pereira, S., Brannan, C., Torgerson, L., & Lazaro-Munoz, G. (2020). Psychiatric genomics researchers’ perspectives on best practices for returning results to individual participants. Genetics in Medicine, 22(2), 345–352.
Lázaro-Muñoz, Torgerson, L., Smith, H. S., & Pereira, S. (2021). Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers. European Journal of Human Genetics : EJHG, 29(2), 231–240.
Into the Wild: The Real-Life Impact of Psychiatric Genetics. World Congress of Psychiatric Genetics; Virtual. Davis L, Degenhardt F, Peay H, Lencz T, Crepaz-Keay D, Sabatello M, Lázaro-Muñoz G (2020)
Return of Results in Psychiatric Genomics Research: Perceptions of Best Practices in a Global Sample of Psychiatric Genetics Researchers. American Society for Bioethics and Humanities Annual Meeting; Virtual. Lázaro-Muñoz G, Torgerson L, Pereira S (October 2020.)
Return of Results from Psychiatric Genomics Research: Current Practices and Attitudes in a Global Sample of Psychiatric Genetics Researchers. ELSI Congress 2020; New York, NY. (accepted/in-person meeting canceled: COVID-19). Lázaro-Muñoz G, Torgerson L, Kostick K, Pereira S.
Researchers’ Moral Attitudes towards Returning Individual Results in Psychiatric Genetics. American Society for Bioethics and Humanities Annual Meeting; Pittsburgh, PA. Kostick K, Torgerson L, Pereira S, Lázaro-Muñoz G (October 2019).
Ideal Practices for Return of Results from Psychiatric Genetics Research. American Society for Bioethics and Humanities Annual Meeting; Pittsburgh, PA. Kostick K, Togerson L, Pereira S, Lázaro-Muñoz G (October 2019).
Psychiatric Genomics Researchers’ Practices and Perspectives on Individual Return of Results. Columbia University. New York, NY. Lázaro-Muñoz G (2019).
Genetic Differential Diagnosis in Highly Treatment Resistant Schizophrenia. Schizophrenia International Research Society; Orlando, FL. Farrell M, Lichtenstein M, Crowley JJ, Filmyer D, Lázaro-Muñoz G, Shaughnessy R, Halvorsen M, Dietterich T, Bruno L, Harner M, Berg J, Szatkiewicz J, Josiassen R, Sullivan PF (2019).
Integrating Psychiatric Genomics into Clinical Care: Ethical and Legal Challenges for Clinicians. Sheppard Pratt Health System; Baltimore, MD. Lázaro-Muñoz G (2019).
Lázaro-Muñoz G. Improved Ethical Guidance for the Return of Results from Psychiatric Genomics Research. Texas Children’s Hospital, Research Resources Office Seminar; Houston, TX. February 2018.
Lázaro-Muñoz G. Should Researchers Return Clinically Relevant Findings Generated in the Course of Psychiatric Genomics Studies? University of Puerto Rico, Río Piedras NEURO ID. San Juan, PR. February 2018.
Study Group on Ethical Aspects of Genetic Testing. American College of Neuropsychopharmacology 57th Annual Meeting; Hollywood, FL. Smoller J, Cook E, Austin J, Lázaro-Muñoz G, Esser D, Appelbaum P (2018).
Maximizing Benefits and Minimizing Harms of Genomic Technologies. NASA Precision Medicine Workshop; Johnson Space Center, Houston, TX. Lázaro-Muñoz G (2018).
Responsible Research and Translation of Psychiatric Genomics. World Congress of Psychiatric Genetics; Glasgow, SCT. Lázaro-Muñoz G (symposium chair and discussant; 2018).
Psychiatric Genomics Researchers’ Concerns about Offering Return of Results to Individual Participants. World Congress of Psychiatric Genetics; Glasgow, SCT. Kostick KM, Brannan C, Pereira S, Lázaro-Muñoz G (2018).
Genome Editing in the Context of Mental Health Disorders. World Congress of Psychiatric Genetics; Glasgow, SCT. Soda T, Grafton A, Farrell M, Giusti-Rodriguez P, Lázaro-Muñoz G (2018).
Researchers’ Attitudes towards Return of Results in Psychiatric Genomics Research. American Society for Bioethics and Humanities Annual Meeting; Anaheim, CA. Kostick KM, Brannan C, Pereira S, Lázaro-Muñoz G (2018).
Population-based Screening for Psychiatric Risk Biomarkers: Ethical, Legal, and Social Implications. American Society for Bioethics and Humanities Annual Meeting; Anaheim, CA. Brannan C, Foulkes AS, Lázaro-Muñoz G (2018).
Managing Return of Results in Genomics Research: Early lessons from psychiatric genetics research. Hispanic Community Health Study / Study of Latinos (HCHS/SOL) Genomic Reporting Committee; teleconference. Lázaro-Muñoz G (2018).
Should Researchers Return Clinically Relevant Findings Generated in the Course of Psychiatric Genomics Studies? University of Puerto Rico, Río Piedras NEURO ID; San Juan, PR. Lázaro-Muñoz G (2018).
Harmonizing Return of Results Policies in International Psychiatric Genomics Research Collaborations. World Congress of Psychiatric Genomics; Orlando, FL. Lázaro-Muñoz G (2017).
Improving Ethical Guidance for the Return of Results from Psychiatric Genomics Research. American Society for Bioethics and Humanities Annual Meeting; Kansas City, MO. Lázaro-Muñoz G (2017).
Return of Results in Psychiatric Genomics Research: Challenges and Opportunities. University of North
Carolina at Charlotte Center for Professional & Applied Ethics Speaker Series; Charlotte, NC. Lázaro-Muñoz G (2017).
Lázaro-Muñoz G. Harmonizing Return of Results Policies in International Psychiatric Genomics Research Collaborations. World Congress of Psychiatric Genetics. Orlando, FL. October 2017.
Lázaro-Muñoz G. Return of Results in Psychiatric Genomics Research: Challenges and Opportunities. University of North Carolina at Charlotte Center for Professional & Applied Ethics Speaker Series; Charlotte, NC.
Lázaro-Muñoz G. The Need for Empirical Data When Examining the Neuroethics of Adaptive Deep Brain Stimulation (aDBS) Systems. International Neuroethics Society Meeting. Washington, DC. November 2017
Lázaro-Muñoz G. Improving Ethical Guidance for the Return of Results from Psychiatric Genomics Research. American Society for Bioethics and Humanities Annual Meeting. Kansas City, MO. October 2017.
Brannan C, Lázaro-Muñoz G.Predicting Schizophrenia and Protecting Against Undue Discrimination. American Society for Bioethics and Humanities Annual Meeting. Kansas City, MO. October 2017.
Fan RH, Lázaro-Muñoz G. Schizophrenia Risk Prediction and its Use in Schools and Universities American Society for Bioethics and Humanities Annual Meeting. Kansas City, MO. October 2017.
Framework for the Return of Results to Psychiatric Genomics Research Participants: What Should Be Offered? World Congress of Psychiatric Genetics; Jerusalem, Israel. Lázaro-Muñoz G, Farrell MS, Ward ET, Iglesias de Ussel MD, Filmyer DM, Finkel G, Crowley JJ,
Shaughnessy RA, Josiassen RC, Sullivan PF (2016).
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Lázaro-Muñoz G. Return of Results in Psychiatric Genomics Research: Challenges and Opportunities. University of North Carolina at Charlotte Center for Professional & Applied Ethics Speaker Series; Charlotte, NC.
The NIH BRAIN Initiative has made a substantial investment to accelerate the development of adaptive deep brain stimulation (aDBS) systems for improving clinical management of treatment-resistant psychiatric and motor disorders.
aDBS systems have emerged as a promising alternative to address significant limitations in conventional open-loop DBS treatment of neuropsychiatric and movement disorders. Studies suggest that open-loop DBS systems can effectively manage treatment-resistant obsessive-compulsive disorder, depression, Parkinson’s disease, Tourette syndrome, and essential tremor, among other disorders.
Unlike DBS, aDBS can record neural activity or other symptom-related markers to adjust stimulation in real time. Therefore, aDBS could provide stimulation only when necessary, avoid overtreatment, and minimize programming trial and error, and potential side effects (e.g. hypomania, changes in personality). In addition, aDBS can lead to improved clinical responses over DBS because it adjusts automatically, thus, it avoids the delay between suboptimal symptom management and adjustment of stimulation in a clinical encounter.
Safe and effective aDBS systems would be a welcomed advance for many patients with neuropsychiatric and movement disorders, but these systems potentially generate difficult ethical challenges that require attention.
Many of the features that make aDBS promising may exacerbate some of the ethical, legal, and social (“neuroethics”) concerns that have been raised about conventional open-loop DBS (e.g. dehumanization, changes in personal identity/personality, changes in participants’ sense of authenticity). aDBS also raises novel issues, which may impact uptake of this new technology, such as the privacy and ownership of recorded neural activity, and if patients have some control over stimulation, the potential for human enhancement by excessive manipulation of symptoms.
The long-term goal of our research program is to develop an ethically-justified and empirically-informed policy framework for the responsible research and translation of aDBS. The objective of this project, which is the first logical step in pursuit of that goal, is to critically evaluate whether pressing neuroethics issues related to aDBS, as identified by key stakeholders, are adequately addressed by current policy and what new policies are needed.
We have received two diversity supplements as part of this work
- An administrative supplement to help enhance diversity in neuroethics by training Katrina Munoz from Baylor College of Medicine in neuroethics research
- An administrative supplement to help enhance diversity in neuroethics by training Professor Demetrio Sierra from the University of Puerto Rico School of Medicine in neuroethics research. The goal is to help launch this professor’s career as an independent neuroethics researcher and help develop a neuroethics program at the University of Puerto Rico.
Supported by: R01 MH114854, National Institute of Mental Health, NIH
Publications
Merner AR, Kostick-Quenet K, Campbell TA, et al. Participant perceptions of changes in psychosocial domains following participation in an adaptive deep brain stimulation trial. Brain Stimul. 2023;16(4):990-998. doi:10.1016/j.brs.2023.06.007
Kostick-Quenet K, Kalwani L, Koenig B, et al. Researchers' Ethical Concerns About Using Adaptive Deep Brain Stimulation for Enhancement. Front Hum Neurosci. 2022;16:813922. Published 2022 Apr 14. doi:10.3389/fnhum.2022.813922
Outram S, Muñoz KA, Kostick-Quenet K, et al. Patient, Caregiver, and Decliner Perspectives on Whether to Enroll in Adaptive Deep Brain Stimulation Research. Front Neurosci. 2021;15:734182. Published 2021 Oct 7. doi:10.3389/fnins.2021.734182
Zuk P, Sanchez C, Kostick K, Torgerson L, Muñoz KA, Hsu R, Kalwani L, Sierra Mercado D, Outram S, Koenig BA, Pereira S, McGuire AL, Lázaro-Muñoz G. Researcher Perspectives on Data Sharing in Deep Brain Stimulation. Frontiers in Human Neuroscience.
Muñoz KA, Kostick K, Sanchez C, Kalwani L, Torgerson L, Hsu R, Sierra-Mercado D, Outram S, Koenig BA, Pereira S, McGuire A, Zuk P, Lázaro-Muñoz G (Accepted). Researcher Perspectives on Ethical Considerations in Adaptive Deep Brain Stimulation Trials. Frontiers in Human Neuroscience.
Wu H, Hariz M, Visser-Vandewalle V, Zrinzo L, Coenen V, Sheth S, Bervoets C, Naesström M, Blomstedt P, Coyne T, Hamani C, Slavin K, Krauss JK, Kahl KG, Taira T, Zhang C,
Sun B, Toda H, Schlaepfer T, Chang JW, Régis J, Schuurman R, Schulder M, Doshi P, Mosley P, Poologaindran A, Lazaro-Munoz G, Pepper J, Schechtmann G, Fytagoridis A, Huys D, Gonçalves-Ferreira A, D’Haese PF, Neimat J, Broggi G,
Vilela-Filho O, Voges J, Alkhani A, Nakajima T, Richieri R, Djurfeldt D, Fontaine P, Martinez-Alvarez R, Okamura Y, Chandler J, Watanabe K, Lozano A, Gabriëls L, De Salles A, Halpern C, Matthews K, Fins J, Nuttin B. (2020). Deep Brain Stimulation for Refractory Obsessive-Compulsive Disorder (OCD): Emerging or Established Therapy? Molecular Psychiatry.
Storch EA, Cepeda SL, Lee E, Goodman S.L.V., Robinson AD, De Nadai A.S., Schneider S.C., Sheth S, Torgerson L, Lázaro-Muñoz G (2020). Parental Attitudes Toward Deep Brain Stimulation in Adolescents with Treatment-Resistant Conditions. J Child Adolescent Psychopharmacol Mar;30(2):97-103.
Ramirez-Zamora A, Giordano JJ, Boyden ES, Gradinaru V, Gunduz A, Starr PA, Sheth SA, McIntyre CC, Fox MD, Vitek JL, Vedam-Mai V, Akbar U, Almeida L, Bronte-Stewart HM,
Mayberg HS, Pouratian N, Gittis A, Singer AC, Creed MC, Lázaro-Muñoz G, Richardson MR, Rossi MA, Cendejas-Zaragoza L, D'Haese P-F, Chiong W, Gilron R, Chizeck H, Ko A, Baker KB, Wagenaar J, Harel N, Deeb W, Foote KD, Okun MS (2019) Proceedings of the Sixth Deep Brain Stimulation Think Tank Modulation of Brain Networks and Application of
Advanced Neuroimaging, Neurophysiology, and Optogenetics. Frontiers in Neuroscience Vol. 13, 936.
Zuk P & Lázaro-Muñoz G (2019). DBS and Autonomy: Clarifying the Role of Theoretical Neuroethics. Neuroethics.
Zuk P & Lázaro-Muñoz G (2019). Ethical Analysis of “Mind Reading” or “Neurotechnological Thought Apprehension”: Keeping Potential Limitations in Mind. AJOB neuroscience 10(1): 32-34.
Kostick KM, Sierra-Mercado D, Lázaro-Muñoz G (2019) Ethical and Social Considerations for Increasing Use of DTC Neurotechnologies. AJOB neuroscience Oct;10(4):183-185.
Sierra-Mercado D, Zuk P, Beauchamp MS, Sheth SA, Yoshor D, Goodman, WK, McGuire AL, Lázaro-Muñoz G (2019). Device Removal Following Brain Implant Research. Neuron 105(5):759-61.
Lázaro-Muñoz G, Zuk P, Pereira, Kostick K, Torgerson L, Sierra-Mercado D, Majumder M, Blumenthal-Barby J, Storch EA, Goodman WK, McGuire AL (2019). Neuroethics at 15: Keep the Kant but Add More Bacon. American Journal of Bioethics: Neuroscience 10(3):97-100.
Lázaro-Muñoz G, Zuk P, Pereira S, Kostick K, Torgerson L, Sierra-Mercado D, Robinson J, Majumder M, Blumenthal-Barby J, Storch E, Sheth SA, Yoshor D, Goodman, WK,
McGuire AL. (2019) Comment on: Neuroethics Roadmap. Advisory Committee to the Director Working Group on BRAIN 2.0 Neuroethics Subgroup (BNS).
Lázaro-Muñoz G, Yoshor D, Beauchamp M, Goodman WK, McGuire AL (2018). Continued Access to Investigational Brain Implants. Nature Reviews Neuroscience doi: 10.1038/s41583-018-0004-5.
Zuk P, Torgerson L, Sierra-Mercado D, Lázaro-Muñoz G (2018). Neuroethics of Neuromodulation: An Update. Current Opinion in Biomedical Engineering 8:45-50 doi: 10.1016/j.cobme.2018.10.003.
Zuk P, McGuire AL, Lázaro-Muñoz G (2018). Alienation, Quality of Life, and DBS for Depression. AJOB Neuroscience 9(4):223-25.
Sierra-Mercado D, Lázaro-Muñoz G (2018). Enhance Diversity Among Researchers to Promote Participant Trust in Precision Medicine Research. American Journal of Bioethics 18(4):44-46.
Brannan C, Foulkes AS, Lázaro-Muñoz G (2018). Preventing Discrimination Based on Psychiatric Risk Biomarkers. AJMG Part B: Neuropsychiatric Genetics doi: 10.1002/ajmg.b.32629.
Sierra-Mercado D, Lázaro-Muñoz G. (2018) Enhance Diversity Among Researchers to Promote Participant Trust in Precision Medicine Research. American Journal of Bioethics 18(4):44-46.
Lázaro-Muñoz G, McGuire AL, Goodman WK. "Should We Be Concerned About Preserving Agency and Personal Identity in Patients with Adaptive Deep Brain Stimulation Systems?" AJOB Neuroscience. 2017;8(2):73-75.
Presentations
Life and Health Decisions with Experimental Brain Implants. International Neuroethics Society Annual Meeting; Virtual. Lázaro-Muñoz, G. (October 2020).
Neuroethics Methodology and the Is-Ought Gap. International Neuroethics Society, Poster Session, Online. Zuk, P. (October 2020).
Researchers’ Perspectives on Changes in Personality, Mood, and Behavior in Adaptive Deep Brain Stimulation Trials. International Neuroethics Society, Poster Session, Online. Zuk, P., Sanchez, C., Lavingia, R., Torgerson, L., Kostick, K., Muñoz, K., et al. (October 2020).
Will cultural beliefs and attitudes lead to social disparities in neurotechnology use? International Neuroethics Society, Virtual. Kostick K, Kalwani, L, Zuk P, Muñoz K, Torgerson L, Sanchez C, Hsu Rebecca, Sierra-Mercado D, Outram S, Koenig B, Pereira S, McGuire A, Lázaro-Muñoz G (October 2020)
Researcher Perspectives on Ethical Considerations in Adaptive Deep Brain Stimulation Trials. International Neuroethics Society Annual Meeting, Poster Presentation, Washington, D.C. Muñoz, K.A., Kostick, K., Sanchez, C., Kalwani, L., Torgerson, L., Hsu, R., Sierra-Mercado, D., Robinson, J.O., Outram, S., Koenig, B.A., Pereira, S., McGuire, A., Zuk, P., Lázaro-Muñoz, G. (October 2020).
Researchers’ views on device removal following brain implant research. International Neuroethics Society Annual Meeting; Virtual. Sierra-Mercado, D, Kostick K, Torgerson L, Hsu R, Outram S, Koenig BA, Pereira S, McGuire A, Zuk P, Lázaro-Muñoz G (October 2020).
Brain Organoids and Uncertainty. American Society for Bioethics and Humanities. Panel Session, Online. Zuk, P. (October 2020).
Researcher Perspectives on Ethical Considerations in Adaptive Deep Brain Stimulation Trials. American Society for Bioethics and Humanities Annual Meeting, Talk Presentation, Baltimore, MD. Muñoz, K.A., Kostick, K., Sanchez, C., Kalwani, L., Torgerson, L., Hsu, R., Sierra-Mercado, Robinson, J.O., D., Outram, S., Koenig, B.A., Pereira, S., McGuire, A., Zuk, P., Lázaro-Muñoz, G. (October 2020).
Beyond treatment: Researchers’ perspectives on the use of adaptive deep brain stimulation (aDBS) for enhancement. American Society for Bioethics and Humanities 22nd Annual Meeting, Virtual. Kostick K, Kalwani L, Torgerson L, McGuire A, Zuk P, Lázaro-Muñoz G (October 2020).
Researchers’ Perspectives on Changes in Personality, Mood, and Behavior in Adaptive Deep Brain Stimulation. BRAIN Initiative PI Meeting, Poster Session, Online. Zuk, P., Sanchez, C., Torgerson, L., Kostick, K., Muñoz, K., Kalwani, L., et al. (June 2020).
Researchers’ Perspectives on Continued Access to Deep Brain Stimulation at the End of Trials. DBS Think Tank; Virtual. Lázaro-Muñoz G (2020).
How do you treat DBS patients during a pandemic?: Ethical and practical challenges to consider. COVID Research Seminar Series, Baylor College of Medicine, Virtual. Kostick K, Storch E, Lázaro-Muñoz G (June 2020).
How Does Neuroethics Contributes to Advances in Neurosciences? University of Puerto Rico NeuroBoricuas Seminar; Virtual. Lázaro-Muñoz G (2020).
Patients’ Perspectives on Closed-Loop Deep Brain Stimulation Devices. Texas Association of Neurological Surgeons Annual Meeting; Dallas, TX. Lázaro-Muñoz G (2020).
Post-trial Obligations Following Brain Implant Research. Texas Association of Neurological Surgeons Annual Meeting; Dallas, TX. Lázaro-Muñoz G (2020).
Continued Access to Investigational Brain Implants: Neuroethics, Policy, and Stakeholder Perspectives. Columbia University, New York, NY. Lázaro-Muñoz G (2020).
Post-trial Obligations Following Implantable Neural Device Research. Stanford Center for Bioethics Seminar Series; Palo Alto, CA. Lázaro-Muñoz G (2019).
Researchers’ Perspectives on Continued Access to Neural Devices Following Adaptive Deep Brain Stimulation Trials. International Neuroethics Society Annual Meeting; Chicago, IL. Lázaro-Muñoz G, Kostick K, Zuk P, Torgerson L, Hsu R, Robinson JO, Sierra-Mercado D, Outram S, Koenig B, Pereira S, McGuire AL (2019).
The Neuroethics of Consciousness Research: A Call for Empirical Investigation. International Neuroethics Society Annual Meeting; Chicago, IL. Zuk P, Lázaro-Muñoz G (2019).
Patients’ reasons for declining to participate in adaptive Deep Brain Stimulation trials. International Neuroethics Society Annual Meeting; Chicago, IL. Kalwani L, Sierra-Mercado D, Outram S, Kostick K, Zuk P, Torgerson L, Hsu R, Robinson JO, Koenig B, Pereira S, McGuire AL, Lázaro-Muñoz G (2019).
Deep Brain Stimulation (DBS) Registries: Is there an Ethical Obligation to Share Data? American Society for Bioethics and Humanities Annual Meeting; Pittsburgh, PA. Lázaro-Muñoz G, Peter Zuk P, McGuire AL (2019).
Data Sharing for Deep Brain Stimulation: Researcher Perspectives. American Society for Bioethics and Humanities Annual Meeting; Pittsburgh, PA. Zuk P, Kostick K, Torgerson L, Hsu R, Robinson JO, Sierra-Mercado D, Outram S, Koenig B, Pereira S, McGuire AL, Lázaro-Muñoz G (2019).
Device Removal Following Brain Implant Research. International Neuroethics Society Annual Meeting; San Diego, CA. Sierra-Mercado D, Zuk P, McGuire AL, Lázaro-Muñoz G. (2018).
aDBS, Automaticity, and Autonomy: In Search of a Way Forward. International Neuroethics Society Annual Meeting; San Diego, CA. Zuk P, Lázaro-Muñoz G (2018).
Right or Privilege?: Continued Access to Investigational Brain Implants. American Society for Bioethics and Humanities Annual Meeting; Anaheim, CA. Lázaro-Muñoz G, Yoshor D, Beauchamp M, Goodman WK, McGuire AL (2018).
Explantation and Continued Access to Investigational Brain Implants. BCM Neurology Grand Rounds; Houston, TX. Lázaro-Muñoz G, Yoshor D, Beauchamp M, Goodman WK, McGuire AL (2018).
Continued Access to Investigational Brain Implants. National Autonomous University of Mexico; Mexico City, MX. Lázaro-Muñoz G, Yoshor D, Beauchamp M, Goodman WK, McGuire AL (2018).
Continued Access to Investigational Brain Implants. VI DBS Think Tank; Atlanta, GA. Lázaro-Muñoz G, Yoshor D, Beauchamp M, Goodman WK, McGuire AL (2018).
Continued Access to Investigational Brain Implants. 4th BRAIN PI Meeting; Rockville, MD. Lázaro-Muñoz G, Yoshor D, Beauchamp M, Goodman WK, McGuire AL (2018).
Managing Return of Results in Genomics Research: Early lessons from psychiatric genetics research. Hispanic Community Health Study / Study of Latinos (HCHS/SOL) Genomic Reporting Committee; teleconference. Lázaro-Muñoz G (2018).
BRAIN Initiative: Neurotechnologies and Neuroethics. University of Puerto Rico School of Medicine, Institute of Bioethics; San Juan, PR. Lázaro-Muñoz G (2018).
Should Researchers Return Clinically Relevant Findings Generated in the Course of Psychiatric Genomics Studies? University of Puerto Rico, Río Piedras NEURO ID; San Juan, PR. Lázaro-Muñoz G (2018).
Right or Privilege? Continued Access to Investigational Brain Implants. University of Puerto Rico School of Law; San Juan, PR. Lázaro-Muñoz G (2018).
Pediatric dystonia is a debilitating movement disorder characterized by involuntary muscle contractions that cause unwanted movements and postures. This progressive disease often results in development of musculoskeletal deformities, which can lead to significant impairments in gait, standing, and hand function thereby severely impacting quality of life.
Since 1999, pediatric deep brain stimulation (pDBS) for refractory dystonia has become increasingly common around the world, but there has been little systematic research (e.g., clinical trials) regarding its safety and effectiveness in minors and limited examination of the ethical challenges and implications of this practice.
The long-term goal of this study is to promote the responsible use of neurotechnologies in children by empirically examining pressing neuroethics issues and decisional and informational needs of using DBS in this vulnerable population. The objectives of this study are 1) to examine which neuroethics issues, if any, actually pose a problem in this setting, determine how these issues manifest, what is the magnitude of the problem from the perspective of stakeholders, and develop ethically-justified guidelines to help manage these issues and 2) to develop a decision aid for families considering pDBS for dystonia. A decision aid for the most common pDBS indication (dystonia) will promote informed decision making, responsible use of DBS in children, and facilitate the development of decision aids for other pediatric neurotechnologies or DBS applications.
Supported by: RF1 MH121371, National Institute of Mental Health, NIH
Publications
Torgerson LN, Munoz K, Kostick K, et al. Clinical and Psychosocial Factors Considered When Deciding Whether to Offer Deep Brain Stimulation for Childhood Dystonia. [published online ahead of print, 2021 Dec 18]. Neuromodulation. 2021;S1094-7159(21)06393-5. doi:10.1016/j.neurom.2021.10.018
Muñoz KA, Kostick K, Torgerson L, Zuk P, Kalwani L, Sanchez C, Blumenthal-Barby J, Storch EA, Lázaro-Muñoz G. Pressing ethical issues in considering pediatric deep brain stimulation for obsessive-compulsive disorder. Brain Stimul. 2021 Nov-Dec;14(6):1566-1572. doi: 10.1016/j.brs.2021.10.388. Epub 2021 Oct 23. PMID: 34700055; PMCID: PMC8608753.
Muñoz KA, Blumenthal-Barby J, Storch EA, Torgerson L, Lázaro-Muñoz G (2020). Pediatric Deep Brain stimulation for Dystonia: Current State and Ethical Considerations. Camb Q Healthc Ethics 29(4):557-573.
Presentations
Neuroethics for Kids: Exploring Ethical Considerations and Decisional Needs of Pediatric Patients Undergoing Deep Brain Stimulation. American Society for Bioethics and Humanities Annual Meeting, Panel Presentation; Virtual. Kostick K, Torgerson L, Munoz K, Kalwani L, Zuk P, Blumenthal-Barby J, Storch EA, Lázaro-Muñoz G (2021).
Clinical and psychosocial factors considered when deciding whether to offer deep brain stimulation for childhood dystonia. International Neuroethics Annual Meeting; Virtual. Torgerson L, Munoz K, Kostick K, Zuk P, Blumenthal-Barby J, Storch EA, Lázaro-Muñoz G (2021).
Pressing ethical issues in considering pediatric deep brain stimulation for obsessive-compulsive disorder. International Neuroethics Annual Meeting; Virtual. Munoz K, Kostick K, Torgerson L, Zuk P, Sanchez C, Blumenthal-Barby J, Storch EA, Lázaro-Muñoz G (2021).
Pressing Ethical Issues in Considering Pediatric Deep Brain Stimulation for Dystonia. 7th Annual BRAIN Initiative Investigators Meeting, Oral Presentation; Virtual. Kostick K, Kalwani L, Munoz K, Torgerson L, Sanchez C, Zuk P, Storch EA, Blumenthal-Barby J, Lázaro-Muñoz G (2021).
Is There an Ideal Patient? Clinician Perceptions of Optimal Candidate for Pediatric Deep Brain Stimulation. 7th Annual BRAIN Initiative Investigators Meeting, Oral Presentation; Virtual. Torgerson L, Blumenthal-Barby J, Storch EA, Kostick K, Munoz K, Lázaro-Muñoz G (2021).
Pressing Ethical Issues in Considering Pediatric Deep Brain Stimulation for Obsessive-Compulsive Disorder. 7th Annual BRAIN Initiative Investigators Meeting, Oral Presentation; Virtual. Munoz K, Kostick K, Torgerson L, Zuk P, Sanchez C, Blumenthal-Barby J, Storch EA, Lázaro-Muñoz G (2021).
Which values ‘count’ in decision making for pediatric deep brain stimulation?
Neuroethics Network, Virtual. Kostick, K. (February 2021).
Pediatric Deep Brain Stimulation for Dystonia:
Current State and Ethical Considerations. International Neuroethics Society Annual Meeting, Poster Presentation, Washington, D.C. Muñoz, K.A., Blumenthal-Barby, J., Storch, E.A., Torgerson, L., Lázaro-Muñoz, G. (October 2020).
Clinicians’ Perspectives on Pressing Ethical Issues for Pediatric Deep Brain Stimulation. International
Neuroethics Society Annual Meeting; Virtual. Kalwani, L, Kostick K, Torgerson L, Muñoz K, Alex SE, Storch EA, Blumenthal-Barby J, Lázaro-Muñoz G (October 2020).
Criteria Clinicians’ Consider Before Offering Pediatric Deep Brain Stimulation. International Neuroethics Society Annual Meeting; Virtual. Torgerson L, Blumenthal-Barby J, Storch EA, Muñoz KA, Lázaro-Muñoz G (2020).
Pediatric Deep Brain Stimulation for Dystonia:
Current State and Ethical Considerations. American Society for Bioethics and Humanities Annual Meeting, Talk Presentation, Baltimore, MD. Muñoz, K.A., Blumenthal-Barby, J., Storch, E.A., Torgerson, L., Lázaro-Muñoz, G. (October 2020).
Pediatric Deep Brain Stimulation for Dystonia:
Current State and Ethical Considerations. 6th Annual BRAIN Initiative Investigators Meeting, Oral Presentation, Arlington, VA. Muñoz, K.A., Blumenthal-Barby, J., Storch, E.A., Torgerson, L., Lázaro-Muñoz, G. (June 2020).
Pediatric Deep Brain Stimulation: Clinicians’ Perspectives on the Most Pressing Ethical Challenges. 6th Annual BRAIN Investigators Meeting; Arlington, VA. Kalwani L, Torgerson L, Kostick K, Muñoz K, Sanchez C, Zuk P, Storch EA, Blumenthal-Barby J, Lázaro-Muñoz G (June 2020).
