Indianapolis, Indiana, United States of America
  •  11
    Defining and Defending Personhood: Lessons from the Disease Debate
    American Journal of Bioethics 24 (1): 41-43. 2024.
    Blumenthal-Barby (2024) presents strong arguments that bioethicists should stop using the concept “personhood.” She points out that “person,” meaning an entity with full moral rights, is defined in...
  •  3
    Selling Clinical Biospecimens: Guidance for Researchers and Private Industry
    with Jane A. Hartsock
    Journal of Law, Medicine and Ethics 51 (2): 429-436. 2023.
    The recently revised Common Rule requires that donors of biospecimens for research be informed if their specimens might be used for commercial profit. The Common Rule, however, does not apply to sharing or selling de-identified biospecimens that are “leftover” from clinical uses. As a result, many medical researchers remain uncertain of their legal and ethical obligations when a commercial entity expresses interest in these specimens.
  •  8
    Rethinking Decision Quality: Measures, Meaning, and Bioethics
    with Greg A. Sachs
    Hastings Center Report 52 (6): 13-22. 2022.
    Studies of patient decision‐making use many different measures to evaluate the quality of decisions and the decision‐making process, partly to determine whether the ethical goals of informed consent, patient autonomy, and shared decision‐making have been achieved. We describe these measures, grouped under three main approaches, and review their limitations, leading to three conclusions. First, no measure or combination of measures can provide a complete assessment of decision quality. Second, th…Read more
  •  28
    Incorporating Biobank Consent into a Healthcare Setting: Challenges for Patient Understanding
    with T. J. Kasperbauer, Karen K. Schmidt, Ariane Thomas, and Susan M. Perkins
    AJOB Empirical Bioethics 12 (2): 113-122. 2021.
  •  13
    Genetic information is widely thought to pose unique risks of reidentifying individuals. Genetic data reveals a great deal about who we are and, the standard view holds, should consequently be treated differently from other types of data. Contrary to this view, we argue that the dangers of reidentification for genetic and nongenetic data—including health, financial, and consumer information—are more similar than has been recognized. Before different requirements are imposed around sharing geneti…Read more
  •  22
    Measuring Understanding and Respecting Trust in Biobank Consent
    American Journal of Bioethics 19 (5): 29-31. 2019.
    Volume 19, Issue 5, May 2019, Page 29-31.
  •  32
    Progress in Defining Disease: Improved Approaches and Increased Impact
    Journal of Medicine and Philosophy 42 (4): 485-502. 2017.
    In a series of recent papers, I have made three arguments about how to define “disease” and evaluate and apply possible definitions. First, I have argued that definitions should not be seen as traditional conceptual analyses, but instead as proposals about how to define and use the term “disease” in the future. Second, I have pointed out and attempted to address a challenge for dysfunction-requiring accounts of disease that I call the “line-drawing” problem: distinguishing between low-normal fun…Read more
  •  993
    How Bioethics Principles Can Aid Design of Electronic Health Records to Accommodate Patient Granular Control
    with Eric M. Meslin
    Journal of General Internal Medicine 30 (1): 3-6. 2014.
    Ethics should guide the design of electronic health records (EHR), and recognized principles of bioethics can play an important role. This approach was adopted recently by a team of informaticists designing and testing a system where patients exert granular control over who views their personal health information. While this method of building ethics in from the start of the design process has significant benefits, questions remain about how useful the application of bioethics principles can be …Read more
  •  460
    To Be or Not to Be – A Research Subject
    with Eric M. Meslin
    In Thomasine Kushner (ed.), Surviving Health Care: A Manual for Patients and their Families, Cambridge University Press. pp. 146-162. 2010.
    Most people do not know there are different kinds of medical studies; some are conducted on people who already have a disease or medical condition, and others are performed on healthy volunteers who want to help science find answers. No matter what sort of research you are invited to participate in, or whether you are a patient when you are asked, it’s entirely up to you whether or not to do it. This decision is important and may have many implications for your health and well-being, as well as …Read more
  •  623
    Giving patients granular control of personal health information: Using an ethics ‘Points to Consider’ to inform informatics system designers
    with Eric M. Meslin, Sheri A. Alpert, Aaron E. Carroll, Jere D. Odell, and William M. Tierney
    International Journal of Medical Informatics 82 1136-1143. 2013.
    Objective: There are benefits and risks of giving patients more granular control of their personal health information in electronic health record (EHR) systems. When designing EHR systems and policies, informaticists and system developers must balance these benefits and risks. Ethical considerations should be an explicit part of this balancing. Our objective was to develop a structured ethics framework to accomplish this. Methods: We reviewed existing literature on the ethical and policy issues,…Read more
  •  418
    Patient Understanding of Benefits, Risks, and Alternatives to Screening Colonoscopy
    with Elizabeth Edenberg, Patrick R. Barrett, Susan M. Perkins, Eric M. Meslin, and Thomas F. Imperiale
    Family Medicine 45 (2): 83-89. 2013.
    While several tests and strategies are recommended for colorectal cancer (CRC) screening, studies suggest that primary care providers often recommend colonoscopy without providing information about its risks or alternatives. These observations raise concerns about the quality of informed consent for screening colonoscopy.
  •  465
    Older Adults and Forgoing Cancer Screening
    with Alexia M. Torke, Laura R. Holtz, Kianna Montz, and Greg A. Sachs
    Journal of the American Medical Association Internal Medicine 173 (7): 526-531. 2013.
    Although there is a growing recognition that older adults and those with extensive comorbid conditions undergo cancer screening too frequently, there is little information about patients’ perceptions regarding cessation of cancer screening. Information on older adults’ views of screening cessation would be helpful both for clinicians and for those designing interventions to reduce overscreening.
  •  442
    Discounting a Surgical Risk: Data, Understanding, and Gist
    American Medical Association Journal of Ethics 14 (7): 532-538. 2012.
  •  554
    Patients should not always receive hard data about the risks and benefits of a medical intervention. That information should always be available to patients who expressly ask for it, but it should be part of standard disclosure only sometimes, and only for some patients. And even then, we need to think about how to offer it.
  •  469
    The Ethics of Information: Absolute Risk Reduction and Patient Understanding of Screening
    with Eric M. Meslin
    Journal of General Internal Medicine 23 (6): 867-870. 2008.
    Some experts have argued that patients should routinely be told the specific magnitude and absolute probability of potential risks and benefits of screening tests. This position is motivated by the idea that framing risk information in ways that are less precise violates the ethical principle of respect for autonomy and its application in informed consent or shared decisionmaking. In this Perspective, we consider a number of problems with this view that have not been adequately addressed. The mo…Read more
  •  698
    Proper function and recent selection
    Philosophy of Science 66 (3): 210-222. 1999.
    "Modern History" versions of the etiological theory claim that in order for a trait X to have the proper function F, individuals with X must have been recently favored by natural selection for doing F (Godfrey-Smith 1994; Griffiths 1992, 1993). For many traits with prototypical proper functions, however, such recent selection may not have occurred: traits may have been maintained due to lack of variation or due to selection for other effects. I examine this flaw in Modern History accounts and of…Read more
  • The Continuing Usefulness Account of Proper Function
    In Andre Ariew, Robert Cummins & Mark Perlman (eds.), Functions: New Essays in the Philosophy of Psychology and Biology, Clarendon Press. 2002.
    'Modern History' views claim that in order for a trait X to have the proper function F, X must have been recently favored by natural selection for doing F (Griffiths 1992, 1993; Godfrey-Smith 1994). For many traits with prototypical proper functions, however, such recent selection may not have occurred, since traits may have been maintained owing to lack of variation or selection for other effects. I explore this flaw in Modern History accounts and offer an alternative etiological theory, which …Read more
  •  222
    Philosophical interest in the biological concept of function stems largely from concerns about its teleological associations. Assigning something a function seems akin to assigning it a purpose, and discussion of the purpose of items has long been off-limits to science. Analytic philosophers have attempted to defend ‘function’ by showing that claims about functions do not involve any reference to a problematic notion of purpose. To do this, philosophers offer short lists of necessary and suffici…Read more
  •  265
    Defending the distinction between treatment and enhancement
    American Journal of Bioethics 5 (3). 2005.
    This Article does not have an abstract
  •  295
    Stem cells: biopsy on frozen embryos
    Hastings Center Report 37 (1): 7. 2007.
  •  295
    Silence about Screening
    American Journal of Bioethics 7 (7): 46-48. 2007.
    No abstract
  •  1773
    Defining dysfunction: Natural selection, design, and drawing a line
    Philosophy of Science 74 (3): 364-385. 2007.
    Accounts of the concepts of function and dysfunction have not adequately explained what factors determine the line between low‐normal function and dysfunction. I call the challenge of doing so the line‐drawing problem. Previous approaches emphasize facts involving the action of natural selection (Wakefield 1992a, 1999a, 1999b) or the statistical distribution of levels of functioning in the current population (Boorse 1977, 1997). I point out limitations of these two approaches and present a solut…Read more
  •  387
    The Value of Information and the Ethics of Personal-Genomic Screening
    American Journal of Bioethics 9 (4): 26-27. 2009.
  •  510
    Disclosure and rationality: Comparative risk information and decision-making about prevention
    Theoretical Medicine and Bioethics 30 (3): 199-213. 2009.
    With the growing focus on prevention in medicine, studies of how to describe risk have become increasing important. Recently, some researchers have argued against giving patients “comparative risk information,” such as data about whether their baseline risk of developing a particular disease is above or below average. The concern is that giving patients this information will interfere with their consideration of more relevant data, such as the specific chance of getting the disease (the “persona…Read more
  • Too Much Information? reply
    Hastings Center Report 42 (1): 7-8. 2012.
  •  459
    Child Safety, Absolute Risk, and the Prevention Paradox
    Hastings Center Report 42 (4): 20-23. 2012.
    Imagine you fly home from vacation with your one-and-a-half-year-old son who is traveling for free as a “lap child.” In the airport parking lot, you put him into his forward-facing car seat, where he sits much more contentedly than he did in the rear-facing one that was mandatory until his first birthday. After he falls asleep on the way home, you transfer him to his crib without waking him, lowering the side rail so you can lift him in more easily. Many parts of this idyllic parenting picture a…Read more
  •  14
    The American Journal of Bioethics, Volume 12, Issue 9, Page 60-61, September 2012
  •  454
    Small Tumors as Risk Factors not Disease
    Philosophy of Science 81 (5): 986-998. 2014.
    I argue that ductal carcinoma in situ (DCIS), the tumor most commonly diagnosed by breast mammography, cannot be confidently classified as cancer, that is, as pathological. This is because there may not be dysfunction present in DCIS—as I argue based on its high prevalence and the small amount of risk it conveys—and thus DCIS may not count as a disease by dysfunction-requiring approaches, such as Boorse’s biostatistical theory and Wakefield’s harmful dysfunction account. Patients should decide a…Read more