•  636
    Manipulation in the Enrollment of Research Participants
    with Amulya Mandava
    Hastings Center Report 43 (2): 38-47. 2013.
    In this paper we analyze the non-coercive ways in which researchers can use knowledge about the decision-making tendencies of potential participants in order to motivate them to consent to research enrollment. We identify which modes of influence preserve respect for participants’ autonomy and which disrespect autonomy, and apply the umbrella term of manipulation to the latter. We then apply our analysis to a series of cases adapted from the experiences of clinical researchers in order to develo…Read more
  •  10
    Disclosure and Consent to Medical Research Participation
    with Danielle Bromwich
    Journal of Moral Philosophy 11 (4). 2014.
    Most regulations and guidelines require that potential research participants be told a great deal of information during the consent process. Many of these documents, and most of the scholars who consider the consent process, assume that all this information must be disclosed because it must all be understood. However, a wide range of studies surveying apparently competent participants in clinical trials around the world show that many do not understand key aspects of what they have been told. Th…Read more
  •  363
    Streamlining Ethical Review
    with J. Menikoff
    Annals of Internal Medicine 153 (10): 655-72. 2010.
    The U.S. review system for human subjects research has been widely criticized in recent years for requirements that delay research without improving human subjects protections. Any major reformulation of regulations may take some time to implement. In the meantime, current regulations often allow for streamlined ethics review without jeopardizing—and possibly improving—protections for research participants. We discuss underutilized options, including research that need not be classified as “hum…Read more
  •  18
    Norvin Richards , The Ethics of Parenthood . Reviewed by
    Philosophy in Review 32 (2): 130-132. 2012.
  •  2094
    Global Bioethics and Political Theory
    In J. Millum & E. J. Millum (eds.), Global Justice and bioethics, Oxford University Press. pp. 17-42. 2012.
    Most bioethicists who address questions to which global justice matters have not considered the significance of the disputes over the correct theory of global justice. Consequently, the significance of the differences between theories of global justice for bioethics has been obscured. In this paper, I consider when and how these differences are important. I argue that certain bioethical problems can be resolved without addressing disagreements about global justice. People with very different vie…Read more
  •  352
    Are pharmaceutical patents protected by human rights?
    Journal of Medical Ethics 34 (11). 2008.
    The International Bill of Rights enshrines a right to health, which includes a right to access essential medicines. This right frequently appears to conflict with the intellectual property regime that governs pharmaceutical patents. However, there is also a human right that protects creative works, including scientific productions. Does this right support intellectual property protections, even when they may negatively affect health? This article examines the recent attempt by the Committee on E…Read more
  •  656
    International Research Ethics Education
    with B. Sina and R. Glass
    Journal of the American Medical Association 313 (5): 461-62. 2015.
    This paper assesses the state of research ethics in low- and middle-income countries and the achievements of the Fogarty International Center's bioethics training program since 2000. The vision of FIC for the next decade of research ethics education is encapsulated in four proposed goals: (1) Ensure sufficient expertise in ethics review by having someone with long-term training on every high-workload REC; (2) Develop LMIC capacity to conduct original research on critical ethical issues by suppor…Read more
  •  2244
    Stillbirths: Economic and Psychosocial Consequences
    with Alexander E. P. Heazell, Dimitros Siassakos, Hannah Blencowe, Zulfiqar A. Bhutta, Joanne Cacciatore, Nghia Dang, Jai Das, Bicki Flenady, Katherine J. Gold, Olivia K. Mensah, Daniel Nuzum, Keelin O'Donoghue, Maggie Redshaw, Arjumand Rizvi, Tracy Roberts, Toyin Saraki, Claire Storey, Aleena M. Wojcieszek, and Soo Downe
    The Lancet 387 (10018): 604-16. 2016.
    Despite the frequency of stillbirths, the subsequent implications are overlooked and underappreciated. We present findings from comprehensive, systematic literature reviews, and new analyses of published and unpublished data, to establish the effect of stillbirth on parents, families, health-care providers, and societies worldwide. Data for direct costs of this event are sparse but suggest that a stillbirth needs more resources than a livebirth, both in the perinatal period and in additional sur…Read more
  •  549
    How Do We Acquire Parental Rights?
    Social Theory and Practice 36 (1): 112-132. 2010.
    In this paper I develop a theory of the acquisition of parental rights. According to this investment theory, parental rights are generated by the performance of parental work. Thus, those who successfully parent a child have the right to continue to do so, and to exclude others from so doing. The account derives from a more general principle of desert that applies outside the domain of parenthood. It also has some interesting implications for the attribution of moral parenthood. In particular, i…Read more
  •  520
    When Should Genome Researchers Disclose Misattributed Pahentage?
    with Amulya Mandava and Benjamin E. Berkman
    Hastings Center Report 45 (4): 28-36. 2015.
    Research studies increasingly use genomic sequencing to draw inferences based on comparisons between the genetic data of a set of purportedly related individuals. As use of this method progresses, it will become much more common to discover that the assumed biological relationships between the individuals are mistaken. Consequently, researchers will have to grapple with decisions about whether to return incidental findings of misattributed parentage on a much larger scale than ever before. In th…Read more
  •  1193
    Disclosure and Consent to Medical Research Participation
    Journal of Moral Philosophy 10 (4): 195-219. 2013.
    Most regulations and guidelines require that potential research participants be told a great deal of information during the consent process. Many of these documents, and most of the scholars who consider the consent process, assume that all this information must be disclosed because it must all be understood. However, a wide range of studies surveying apparently competent participants in clinical trials around the world show that many do not understand key aspects of what they have been told. Th…Read more
  •  470
    Transmitting Cholera to Haiti
    In Drue H. Barrett, Gail Bolan, Angus Dawson, Leonard Ortmann, Andreas Reis & Carla Saenz (eds.), Public Health Ethics: Cases Spanning the Globe, Springer. pp. 270-74. 2016.
  •  68
    Review of Michael W. Austin, Conceptions of Parenthood: Ethics and the Family (review)
    Notre Dame Philosophical Reviews 2008 (4). 2008.
  •  261
    Introduction: Case Studies in the Ethics of Mental Health Research
    Journal of Nervous and Mental Disease 200 230-35. 2012.
    This collection presents six case studies on the ethics of mental health research, written by scientific researchers and ethicists from around the world. We publish them here as a resource for teachers of research ethics and as a contribution to several ongoing ethical debates. Each consists of a description of a research study that was proposed or carried out and an in-depth analysis of the ethics of the study.
  •  326
    Controlling Ebola Trials
    American Journal of Bioethics 15 (4): 36-37. 2015.
  •  395
    Preventing Sin: The Ethics of Vaccines Against Smoking
    Hastings Center Report 43 (3): 23-33. 2013.
    Advances in immunotherapy pave the way for vaccines that target not only infections, but also unhealthy behaviors such as smoking. A nicotine vaccine that eliminates the pleasure associated with smoking could potentially be used to prevent children from adopting this addictive and dangerous behavior. This paper offers an ethical analysis of such vaccines. We argue that it would be permissible for parents to give their child a nicotine vaccine if the following conditions are met: (1) the vaccine …Read more
  •  268
    The 50th Anniversary of the Declaration of Helsinki: Progress but Many Remaining Challenges
    Journal of the American Medical Association 310 (20): 2143-44. 2013.
    Since 1964, through 7 revisions, the World Medical Association’s Declaration of Helsinki has stood as an important statement regarding the ethical principles guiding medical research with human participants. It is consulted by ethics review committees, funders, researchers, and research participants. It has been incorporated into national legislation and is routinely invoked to ascertain the ethical appropriateness of clinical trials. There is much to praise about the revision process and the la…Read more
  •  492
    Valuing Stillbirths
    with John Phillips
    Bioethics 29 (6): 413-423. 2014.
    Estimates of the burden of disease assess the mortality and morbidity that affect a population by producing summary measures of health such as quality-adjusted life years and disability-adjusted life years. These measures typically do not include stillbirths among the negative health outcomes they count. Priority-setting decisions that rely on these measures are therefore likely to place little value on preventing the more than three million stillbirths that occur annually worldwide. In contrast…Read more
  •  638
    Introduction: The Fogarty International Research Ethics Education and Curriculum Development Program in Historical Context
    with Christine Grady, Gerald Keusch, and Barbara Sina
    Journal of Empirical Research on Human Research Ethics: An International Journal 8 (5): 3-16. 2013.
    In response to the increasing need for research ethics expertise in low and middle income countries (LMICs), the NIH's Fogarty International Research Ethics Education and Curriculum Development Program has provided grants for the development of training programs in international research ethics for LMIC professionals since 2000. This collection of papers draws upon the combined expertise of Fogarty grantees, trainees, and other experts to assess the state of research ethics in LMICs, and the les…Read more
  •  279
    Canada’s Tri-Council Policy Statement: Ethical conduct for research involving humans, first published in 1998, has recently been updated.1 The US Department of Health and Human Services has just issued an Advance Notice of Proposed Rulemaking that would substantially change the 20-year-old Common Rule governing most federally funded research involving human participants.2 A comparison of the two countries’ systems for protecting human research participants is therefore timely. This analysis situ…Read more
  •  270
    How Should the Benefits of Bioprospecting Be Shared?
    Hastings Center Report 40 (1): 24-33. 2010.
    The search for valuable new products from among the world’s stock of natural biological resources is mostly carried out by people from wealthy countries, and mostly takes place in developing countries that lack the research capacity to profit from it. Surely, the indigenous people should receive some compensation from it. But we must build a robust defense for this intuition, rooted in the Western moral traditions that are widely accepted in wealthy countries, if we are to put it into practice a…Read more
  •  764
    Age and Death: A Defence of Gradualism
    Utilitas 27 (3): 279-297. 2015.
    According to standard comparativist views, death is bad insofar as it deprives someone of goods she would otherwise have had. In The Ethics of Killing, Jeff McMahan argues against such views and in favor of a gradualist account according to which how bad it is to die is a function of both the future goods of which the decedent is deprived and her cognitive development when she dies. Comparativists and gradualists therefore disagree about how bad it is to die at different ages. In this paper I ex…Read more
  •  623
    Are Indirect Benefits Relevant to Health Care Allocation Decisions?
    with Jessica Du Toit
    Journal of Medicine and Philosophy 41 (5): 540-557. 2016.
    When allocating scarce healthcare resources, the expected benefits of alternative allocations matter. But, there are different kinds of benefits. Some are direct benefits to the recipient of the resource such as the health improvements of receiving treatment. Others are indirect benefits to third parties such as the economic gains from having a healthier workforce. This article considers whether only the direct benefits of alternative healthcare resource allocations are relevant to allocation de…Read more