Jason Scott Robert

Crossing species boundaries

This paper critically examines the biology of species identity and the morality of crossing species boundaries in the context of emerging research that involves combining human and nonhuman animals at the genetic or cellular level. We begin with the notion of species identity, particularly focusing on the ostensible fixity of species boundaries, and we explore the general biological and philosophical problem of defining species. Against this backdrop, we survey and criticize earlier attempts to forbid crossing species boundaries in the creation of novel beings. We do not attempt to establish the immorality of crossing species boundaries, but we conclude with some thoughts about such crossings, alluding to the notion of moral confusion regarding social and ethical obligations to novel interspecies beings.

Duty to disclose what? Querying the putative obligation to return research results to participants

Many research ethics guidelines now oblige researchers to offer research participants the results of research in which they participated. This practice is intended to uphold respect for persons and ensure that participants are not treated as mere means to an end. Yet some scholars have begun to question a generalised duty to disclose research results, highlighting the potential harms arising from disclosure and questioning the ethical justification for a duty to disclose, especially with respect to individual results. In support of this view, we argue that current rationales for a duty of disclosure do not form an adequate basis for an ethical imperative. We review policy guidance and scholarly commentary regarding the duty to communicate the results of biomedical, epidemiological and genetic research to research participants and show that there is wide variation in opinion regarding what should be disclosed and under what circumstance. Moreover, we argue that there is fundamental confusion about the notion of “research results,” specifically regarding three core concepts: the distinction between aggregate and individual results, amongst different types of research, and across different degrees of result veracity. Even where policy guidance and scholarly commentary have been most forceful in support of an ethical imperative to disclose research results, ambiguity regarding what is to be disclosed confounds ethical action.

The Ethos and Ethics of Translational Research

Calls for the “translation” of research from bench to bedside are increasingly demanding. What is translation, and why does it matter? We sketch the recent history of outcome-oriented translational research in the United States, with a particular focus on the Roadmap Initiative of the National Institutes of Health (Bethesda, MD). Our main example of contemporary translational research is stem cell research, which has superseded genomics as the translational object of choice. We explore the nature of and obstacles to translational research and assess the ethical and biomedical challenges of embracing a translational ethos.

When research seems like clinical care: a qualitative study of the communication of individual cancer genetic research results

BackgroundResearch ethicists have recently declared a new ethical imperative: that researchers should communicate the results of research to participants. For some analysts, the obligation is restricted to the communication of the general findings or conclusions of the study. However, other analysts extend the obligation to the disclosure of individual research results, especially where these results are perceived to have clinical relevance. Several scholars have advanced cogent critiques of the putative obligation to disclose individual research results. They question whether ethical goals are served by disclosure or violated by non-disclosure, and whether the communication of research results respects ethically salient differences between research practices and clinical care. Empirical data on these questions are limited. Available evidence suggests, on the one hand, growing support for disclosure, and on the other, the potential for significant harm.MethodsThis paper explores the implications of the disclosure of individual research results for the relationship between research and clinical care through analysis of research-based cancer genetic testing in Ontario, Canada in the late 1990s. We analyze a set of 30 interviews with key informants involved with research-based cancer genetic testing before the publicly funded clinical service became available in 2000.ResultsWe advance three insights: First, the communication of individual research results makes research practices seem like clinical services for our respondents. Second, while valuing the way in which research enables a form of clinical access, our respondents experience these quasi-clinical services as inadequate. Finally, our respondents recognize the ways in which their experience with these quasi-clinical services is influenced by research imperatives, but understand and interpret the significance and appropriateness of these influences in different ways.ConclusionOur findings suggest that the hybrid state created through the disclosure of research results about individuals that are perceived to be clinically relevant may produce neither sufficiently adequate clinical care nor sufficiently ethical research practices. These findings raise questions about the extent to which research can, and should, be made to serve clinical purposes, and suggest the need for further deliberation regarding any ethical obligation to communicate individual research results.

The science and ethics of making part-human animals in stem cell biology.

The National Academy of Sciences recently issued voluntary guidelines to govern human embryonic stem cell research. Among other restrictions, these guidelines prohibit certain kinds of combinations of human and nonhuman animal cells, and call for ethics review and oversight of any protocol involving the transfer of human embryonic stem cells into nonhuman animals. In this essay, I discuss the history of and scientific rationales for combining human cells with cells of nonhuman animals, and critically assess the most recent attempts to limit such research on moral grounds—and find them lacking. Nonetheless, as I show, this research remains scientifically and morally contested. I then explore whether and how the NASs recommended Embryonic Stem Cell Research and Oversight committees will allow for scientifically well‐informed moral assessment of this controversial, but possibly important, research.—Robert, J. S. The science and ethics of making part‐human animals in stem cell biology. FASEB J. 20, 838–845 (2006)

Interpreting the homeobox: metaphors of gene action and activation in development and evolution

SUMMARY Despite countless research efforts to demonstrate the precise developmental and evolutionary nature of homeobox genes, we are far from consensus on the role of this class of genes in development and evolution. This essay attempts to clarify the debate and to nip some problematic interpretations in the bud, by exploring metaphors of homeobox gene function in development and evolution.

Questioning the Consensus: Managing Carrier Status Results Generated by Newborn Screening

An apparent consensus governs the management of carrier status information generated incidentally through newborn screening: results cannot be withheld from parents. This normative stance encodes the focus on autonomy and distaste for paternalism that characterize the principles of clinical bioethics. However, newborn screening is a classic public health intervention in which paternalism may trump autonomy and through which parents are-in effect-required to receive carrier information. In truth, the disposition of carrier results generates competing moral infringements: to withhold information or require its possession. Resolving this dilemma demands consideration of a distinctive body of public health ethics to highlight the moral imperatives associated with the exercise of collective authority in the pursuit of public health benefits.

How developmental is evolutionary developmental biology

Evolutionary developmental biology (evo-devo) offers both an account of developmental processes and also new integrative frameworks for analyzing interactions between development and evolution. Biologists and philosophers are keen on evo-devo in part because it appears to offer a comfort zone between, on the one hand, what some take to be the relative inability of mainstream evolutionary biology to integrate a developmental perspective; and, on the other hand, what some take to be more intractable syntheses of development and evolution. In this article, I outline core concerns of evo-devo, distinguish theoretical and practical variants, and counter Sterelnys recent argument that evo-devos attention to development, while important, offers no significant challenge to evolutionary theory as we know it.Evolutionary developmental biology (evo-devo) offers both an account of developmental processes and also new integrative frameworks for analyzing interactions between development and evolution. Biologists and philosophers are keen on evo-devo in part because it appears to offer a comfort zone between, on the one hand, what some take to be the relative inability of mainstream evolutionary biology to integrate a developmental perspective; and, on the other hand, what some take to be more intractable syntheses of development and evolution. In this article, I outline core concerns of evo-devo, distinguish theoretical and practical variants, and counter Sterelnys recent argument that evo-devos attention to development, while important, offers no significant challenge to evolutionary theory as we know it.

Continuous Deep Sedation in End-of-Life Care: Disentangling Palliation From Physician-Assisted Death

Medical professionals, clinical ethicists, and members of the public have voiced uncertainty about what constitutes continuous deep sedation (CDS), how frequently it is administered, and how it compares to other end-of-life practices. Arguments supportive of CDS have been advanced, but CDS as a practice persists in obscurity; therefore, these arguments cannot be properly assessed either normatively or empirically. Debates about CDS are nowhere near as robust as they should be. In this commentary, we assess the state of the literature in regard to the premise upon which the analysis of the “preferable alternative” argument put forth by Raus and colleagues (2011) relies—that CDS is a practice of palliation. We postulate that, even assuming the premise to be true, considerable uncertainty remains downstream as to whether CDS is an effective practice in palliative care. We are not challenging the soundness of Raus and colleagues’ analysis of the argument of “preferable alternative.” Instead, we posit that both the argument and the unfavorable analysis rest on shaky grounds. We would agree with Raus and colleagues that if CDS were congruent with palliative care, it could not have been thought of as an alternative to physician-assisted suicide. We use here the term physician-assisted death (PAD) instead of physicianassisted suicide because it is inclusive of all life-ending interventions performed by or assisted by a physician (Rady and Verheijde 2010). Palliative care and PAD attend to different patients’ various needs and goals in medical practice. Raus and colleagues examine varying versions of an argument that considers CDS an inherently preferable alternative to PAD. Their argument is based on two assumptions: (1) CDS can alleviate even the most severe suffering; and (2) CDS is morally and legally unproblematic in medical practice. They argue that there is no need for PAD because CDS prevents patients from suffering at the end of their lives. Although Raus and colleagues argue that CDS is as susceptible to ethical controversy as PAD, they point out normatively

Human Embryonic Stem Cell Research: An Argument for National Research Review

The US National Academy of Sciences (NAS) recently published voluntary guidelines for human embryonic stem (hES) cell research. The NAS guidelines propose two levels of oversight. At the local level, research institutions are to create Embryonic Stem Cell Research Oversight (ESCRO) committees with a mandate to assess the scientific merit and ethical acceptability of hES cell research. At the national level, a new committee is to be created, not to review specific research proposals, but rather to periodically assess, and as needed revise, the NAS guidelines. In this article, we critically assess this proposal. In particular, we review the benefits and limitations of local research review. On this basis, we argue that local review is insufficient for hES cell research and that while there are obvious pragmatic and political reasons for the NAS to favor local research review, there are more compelling reasons for the NAS to have recommended national review of hES cell research proposals.