Papers by T.J. Kasperbauer
Journal of Medical Ethics
The standard approach to protecting privacy in healthcare aims to control access to personal info... more The standard approach to protecting privacy in healthcare aims to control access to personal information. We cannot regain control of information after it has been shared, so we must restrict access from the start. This ‘control’ conception of privacy conflicts with data-intensive initiatives like precision medicine and learning health systems, as they require patients to give up significant control of their information. Without adequate alternatives to the control-based approach, such data-intensive programmes appear to require a loss of privacy. This paper argues that the control view of privacy is shortsighted and overlooks important ways to protect health information even when widely shared. To prepare for a world where we no longer control our data, we must pursue three alternative strategies: obfuscate health data, penalise the misuse of health data and improve transparency around who shares our data and for what purposes. Prioritising these strategies is necessary when health...
Journal of Empirical Research on Human Research Ethics, 2021
Biobank participants are often unaware of possible uses of their genetic and health information, ... more Biobank participants are often unaware of possible uses of their genetic and health information, despite explicit descriptions of those uses in consent forms. To explore why this misunderstanding persists, we conducted semi-structured interviews and knowledge tests with 22 participants who had recently enrolled in a research biobank. Results indicated that participants lacked understanding of privacy and data-sharing topics but were mostly unconcerned about associated risks. Participants described their answers on the knowledge test as largely driven by their trust in the healthcare system, not by a close reading of the information presented to them. This finding may help explain the difficulties in increasing participant understanding of privacy-related topics, even when such information is clearly presented in biobank consent forms.
Hastings Center Report
Genetic information is widely thought to pose unique risks of re-identifying individuals. Genetic... more Genetic information is widely thought to pose unique risks of re-identifying 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 re-identification for genetic and non-genetic data-including health, financial, and consumer information-are more similar than has been recognized. Before we impose different requirements on sharing genetic information, proponents of the standard view must show that they are in fact necessary. We further argue that the similarities between genetic and non-genetic information have important implications for communicating risks during consent for healthcare and research. While patients and research participants need to be more aware of pervasive data sharing practices, consent forms are the wrong place to provide this education. Instead, health systems should engage with patients throughout patient care to educate about data sharing practices.
Journal of Evaluation in Clinical Practice
The goals of learning health systems (LHS) and of AI in medicine overlap in many respects. Both r... more The goals of learning health systems (LHS) and of AI in medicine overlap in many respects. Both require significant improvements in data sharing and IT infrastructure, aim to provide more personalized care for patients, and strive to break down traditional barriers between research and care. However, the defining features of LHS and AI diverge when it comes to the people involved in medicine, both patients and providers. LHS aim to enhance physician-patient relationships while developments in AI emphasize a physicianless experience. LHS also encourage better coordination of specialists across the health system, but AI aims to replace many specialists with technology and algorithms. This paper argues that these points of conflict may require a reconsideration of the role of humans in medical decision making. Although it is currently unclear to what extent machines will replace humans in healthcare, the parallel development of LHS and AI raises important questions about the exact role for humans within AI-enabled healthcare.
Frontiers in Medicine, 2021
Research biobanks that enroll minors face important practical, ethical, and regulatory challenges... more Research biobanks that enroll minors face important practical, ethical, and regulatory challenges in reconsenting participants when they reach the age of 18. Federal regulations governing research in the United States provide minimal guidance and allow for a range of practices, including waiving the requirement to obtain reconsent. Some commentators have argued that institutional review boards should indeed grant such waivers, given the low risks of biobank-based research and the impracticality of contacting all participants when they turn 18. There is also significant ethical debate about the age at which adolescents can make authentic, autonomous decisions regarding their research participation. This paper reviews these issues in detail, describes the current state of the ethical discussion, and outlines evidence-based policies for enrolling minors into research biobanks.
Ethics & Human Research
Biobank participants often do not understand the information they are provided during the informe... more Biobank participants often do not understand the information they are provided during the informed consent process. Ethicists and other stakeholders have disagreed, however, on the appropriate response to these failures in understanding. This paper describes an attempt to address this issue by conducting knowledge tests with 22 recent biobank enrollees, followed by in-depth, semistructured interviews about the goal of understanding in biobank consent. The interviews revealed that while biobank enrollees thought the information on the knowledge test was important, they did not think that performance on the test should affect whether individuals are permitted to enroll in a biobank. Three main themes emerged from the interviews: helping others by contributing to research is more important than understanding consent forms, less understanding is required because biobank-based research is low risk, and only a small amount of information in the consent form is really essential. These perspectives should be considered in discussing the ethics and governance of biobank consent processes.
AJOB Empirical Bioethics
Abstract Background Biobank participants often do not understand much of the information they are... more Abstract Background Biobank participants often do not understand much of the information they are provided as part of the informed consent process, despite numerous attempts at simplifying consent forms and improving their readability. We report the first assessment of biobank enrollees’ comprehension under an "integrated consent” process, where patients were asked to enroll in a research biobank as part of their normal healthcare experience. A number of healthcare systems have implemented similar integrated consent processes for biobanking, but it is unknown how much patients understand after enrolling under these conditions. Methods: We recruited patients who enrolled in a biobank while in a healthcare setting when receiving ordinary care. We assessed knowledge of consent materials using 11 true/false questions drawn from a well-known biobank knowledge test. After reviewing the results from 114 participants, we revised the consent form and repeated the knowledge assessment with 144 different participants. Results: Participants scored poorly on the knowledge test in both rounds, with no significant differences in overall scores or individual items between the rounds. In Phase 1, participants answered 53% of the questions correctly, 25% incorrectly, and 22% “I don’t know.” In Phase 2, participants answered 53% of questions correctly, 24% incorrectly, and 23% “I don’t know.” Participants scored particularly poorly on questions about data sharing and accessing medical records. Conclusions: Enrollees under an integrated consent model had significant misunderstandings that persisted despite an attempt to improve information specifically about those topics in a consent form. These results raise challenges for current approaches that attribute misunderstanding to overly complex consent forms. They also suggest that the pressures of the clinic may compound other problems with patient understanding of biobank consent. As health systems increasingly blend research and care, they may need to rethink their approach to educating patients about participation in a biobank.
Academic Medicine
Academic health centers and health systems increasingly ask patients to enroll in research bioban... more Academic health centers and health systems increasingly ask patients to enroll in research biobanks as part of standard care, raising important practical and ethical questions for integrating biobank consent processes into health care settings. This article aims to assist academic health centers and health systems considering implementing these integrated consent processes by outlining the 5 main issues-and the key practical and ethical considerations for each issue-that Indiana University Health and the Indiana Biobank faced when integrating biobank consent into their health system, as well as the key obstacles encountered. The 5 main issues to consider include the specimen to collect (leftover, new collection, or add-ons to clinical tests), whether to use opt-in or opt-out consent, where to approach patients, how to effectively use digital tools for consent, and how to appropriately simplify consent information.
Bioethics
This paper argues that the Food and Drug Administration's (FDA) policy for health and wellnes... more This paper argues that the Food and Drug Administration's (FDA) policy for health and wellness apps is ethically problematic. Currently, the FDA does not regulate health and wellness apps that are not intended for medical use. As a result of this hands-off policy, preventing harm to consumers is left primarily to developers and app marketplaces. We argue that the FDA's duties to prevent harm and maintain accountability to the American public require that they play a much stronger role. We also discuss concerns about efficiency and fostering innovation, and argue that while they should help shape FDA regulation of health and wellness apps, they do not justify complete absence of FDA involvement.
The American Journal of Bioethics, 2019
Journal of bioethical inquiry, 2018
Aulisio and Arora argue that the moral significance of value imposition explains the moral distin... more Aulisio and Arora argue that the moral significance of value imposition explains the moral distinction between traditional conscientious objection and non-traditional conscientious objection. The former objects to directly performing actions, whereas the latter objects to indirectly assisting actions on the grounds that indirectly assisting makes the actor morally complicit. Examples of non-traditional conscientious objection include objections to the duty to refer. Typically, we expect physicians who object to a practice to refer, but the non-traditional conscientious objector physician refuses to refer. Aulisio and Arora argue that physicians have a duty to refer because refusing to do so violates the patient's values. While we agree with Aulisio and Arora's conclusions, we argue value imposition cannot adequately explain the moral difference between traditional conscientious objection and non-traditional conscientious objection. Treating autonomy as the freedom to live in...
Cambridge quarterly of healthcare ethics : CQ : the international journal of healthcare ethics committees, 2018
Recent highly publicized privacy breaches in healthcare and genomics research have led many to qu... more Recent highly publicized privacy breaches in healthcare and genomics research have led many to question whether current standards of data protection are adequate. Improvements in de-identification techniques, combined with pervasive data sharing, have increased the likelihood that external parties can track individuals across multiple databases. This article focuses on the communication of identifiability risks in the process of obtaining consent for donation and research. Most ethical discussions of identifiability risks have focused on the severity of the risk and how it might be mitigated, and what precisely is at stake in pervasive data sharing. However, there has been little discussion of whether and how to communicate the risk to potential donors. We review the ethical arguments behind favoring different types of risk communication in the consent process, and outline how identifiability concerns can be incorporated into either a detailed or a simplified method of communicating...
Reproduction of animals in captivity is tightly controlled. In stark contrast, regulating the rep... more Reproduction of animals in captivity is tightly controlled. In stark contrast, regulating the reproductive behavior of human beings is generally seen as impermissible. Why is this? This chapter discusses reproductive control of primates in light of two main reasons that human beings are granted reproductive rights: the importance of autonomy and human interest in procreation. I argue that captive primates pose a challenge to the use of birth control in captivity, because they too have important interests in reproductive autonomy and procreation. If we are to be consistent, it seems we must grant reproductive rights to some captive primates, perhaps at least the great apes. However, I further argue that there is room to limit reproduction within the framework of reproductive rights. Even in the case of human beings, it is widely accepted that limiting reproduction is permissible in certain circumstances. In captivity, unlimited reproduction would quickly lead to overpopulation, causi...
Ethics, Policy & Environment
Recent advances in synthetic biology have made it possible to revive extinct species of animals, ... more Recent advances in synthetic biology have made it possible to revive extinct species of animals, a process known as 'de-extinction'. This paper examines two reasons for supporting de-extinction: (1) the potential for de-extinct species to play useful roles in ecosystems; and (2) human valuing of certain de-extinct species. I focus on the particular case of passenger pigeons to argue that the most critical challenge for de-extinction is that it entails significant suffering for sentient individual animals. I also provide reasons to take existence value, or valuing the mere the fact that a species exists, into consideration in debates over de-extinction.
Environmental Values, 2016
Most philosophers and psychologists who have explored the psychology of climate change have focus... more Most philosophers and psychologists who have explored the psychology of climate change have focused only on motivational issues - getting people to act on what morality requires of them. This is misleading, however, because there are other psychological processes directed not at motivation but rather our ability to grasp the implications of climate change in a general way - what Stephen Gardiner has called the 'grasping problem'. Taking the grasping problem as my departure point, I draw two conclusions from the relevant psychological literature: 1) ethicists and policy makers should focus less on changing individuals' behaviours and more on changing policy; and 2) although solutions to climate change must come at the level of policy, progress on this front will be limited by incompatible moral norms.
Philosophical Studies, 2016
Ethicists have tended to treat the psychology of attributing mental states to animals as an entir... more Ethicists have tended to treat the psychology of attributing mental states to animals as an entirely separate issue from the moral importance of animals’ mental states. In this paper I bring these two issues together. I argue for two theses, one descriptive and one normative. The descriptive thesis holds that ordinary human agents use what are generally called phenomenal mental states (e.g., pain and other emotions) to assign moral considerability to animals. I examine recent empirical research on the attribution of phenomenal states and agential states (e.g., memory and intelligence) to argue that phenomenal mental states are the primary factor, psychologically, for judging an animal to be morally considerable. I further argue that, given the role of phenomenal states in assigning moral considerability, certain theories in animal ethics will meet significant psychological resistance. The normative thesis holds that ethicists must take the psychology of attributing mental states into account when constructing moral ideals concerning animals. I draw from the literature in political philosophy on ideal and non-ideal theory to argue that non-ideal theories for animals must account for human psychology because—like current social and political conditions—human psychology limits the achievement of moral ideals.
Environmental Ethics, 2014
Environmental Ethics, 2015
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Papers by T.J. Kasperbauer