Rachel A. Ankeny

The natural history of Caenorhabditis elegans research

The nematode Caenorhabditis elegans is well known to practising biologists as a model organism. Early work with C. elegans is best understood as part of a descriptive tradition in biological practice. Although the resources that have been generated by the C. elegans community have been revolutionary, they were produced by traditional methods and approaches. Here, I review the choice and use of the worm as an experimental organism for genetics and neurobiology that began in the 1960s.

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 Our main example of contemporary translational research is stem cell research, which has superseded genomics as the translational object of choice.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.

Re-thinking organisms: The impact of databases on model organism biology

Community databases have become crucial to the collection, ordering and retrieval of data gathered on model organisms, as well as to the ways in which these data are interpreted and used across a range of research contexts. This paper analyses the impact of community databases on research practices in model organism biology by focusing on the history and current use of four community databases: FlyBase, Mouse Genome Informatics, WormBase and The Arabidopsis Information Resource. We discuss the standards used by the curators of these databases for what counts as reliable evidence, acceptable terminology, appropriate experimental set-ups and adequate materials (e.g., specimens). On the one hand, these choices are informed by the collaborative research ethos characterising most model organism communities. On the other hand, the deployment of these standards in databases reinforces this ethos and gives it concrete and precise instantiations by shaping the skills, practices, values and background knowledge required of the database users. We conclude that the increasing reliance on community databases as vehicles to circulate data is having a major impact on how researchers conduct and communicate their research, which affects how they understand the biology of model organisms and its relation to the biology of other species.

Model Organisms as Models: Understanding the 'Lingua Franca' of the Human Genome Project

Through an examination of the actual research strategies and assumptions underlying the Human Genome Project (HGP), it is argued that the epistemic basis of the initial model organism programs is not best understood as reasoning via causal analog models (CAMs). In order to answer a series of questions about what is being modeled and what claims about the models are warranted, a descriptive epistemological method is employed that uses historical techniques to develop detailed accounts which, in turn, help to reveal forms of reasoning that are explicit, or more often implicit, in the practice of a particular field of scientific study. It is suggested that a more valid characterization of the reasoning structure at work here is a form of case-based reasoning. This conceptualization of the role of model organisms can guide our understanding and assessment of these research programs, their knowledge claims and progress, and their limitations, as well as how we educate the public about this type of biomedical research.

Specific Unwillingness to Donate Eyes: The Impact of Disfigurement, Knowledge and Procurement on Corneal Donation

Although willingness, attitudes and beliefs surrounding solid‐organ donation have been extensively investigated, much less is known about corneal donation. Despite evidence that a substantial number of families who agree to multiorgan donation also specifically refuse corneal donation, it is unclear why this occurs and what can be done to increase rates of corneal donation. We conducted a survey of 371 Australian adults regarding their views on corneal donation. Although willingness to donate corneas generally reflected a persons willingness to donate all of ones organs, unwillingness to donate corneas appeared to be due to other factors. Specifically, decisions not to donate appear to be driven by a range of concerns surrounding disfigurement. The survey also provides eye banks with reassurance about the acceptability of whole globe procurement, and recognition that research into blindness is a highly valued part of corneal donation. Finally, the survey identifies that many individuals see benefit in having their family engaged in the decision‐making process, suggesting that decisions about donation are more complex than a simple appeal to the autonomy of the deceased.

Establishing the role of pre-implantation genetic diagnosis with human leucocyte antigen typing: what place do “saviour siblings” have in paediatric transplantation?

Background: Not all children in need of a haematopoietic stem cell transplant have a suitable relative or unrelated donor available. Recently, in vitro fertilisation (IVF) with pre-implantation genetic diagnosis (PGD) for human leucocyte antigen (HLA) tissue typing has been used to selectively transfer an IVF embryo in order to produce a child who may provide umbilical cord blood for transplantation to an ill sibling. Such children are sometimes called “saviour siblings”. Objective: To examine the published clinical and epidemiological evidence relevant to the use of this technology, with the aim of clarifying those situations where IVF and PGD for HLA typing should be discussed with parents of an ill child. Design: A critical analysis of published literature on comparative studies of umbilical cord blood versus other sources of stem cells for transplantation; comparative studies of matched unrelated donor versus matched related donor transplantation; and the likelihood of finding an unrelated stem cell donor. Conclusion: IVF and PGD for HLA typing is only applicable when transplantation is non-urgent and parents are of reproductive age. Discussions regarding this technology may be appropriate where no suitable related or unrelated donor is available for a child requiring a transplant, or where no suitable related donor is available and transplantation is only likely to be entertained with a matched sibling donor. Discussion may also be considered in the management of any child lacking a matched related donor who requires a non-urgent transplant or may require a transplant in the future.

Consent in crisis: the need to reconceptualize consent to tissue banking research

The issues surrounding consent to tissue banking research in Australia are complex and have created a forum of intense debate, thus providing a window of opportunity to critically appraise and challenge standard models of consent for research in general and for tissue banking research in particular. The usual practical difficulties associated with meeting the criteria for valid consent to research (including adequate information provision and voluntariness) are amplified in the case of tissue banking research. A number of models, based on widely accepted ethical principles, have been proposed to improve the process of obtaining consent to tissue banking research, all of which assume that the consent of individual tissue donors is needed to meet the criteria for valid consent. Feminist and communitarian theories use many of the same criteria for valid consent but interpret these criteria differently and de‐emphasize the importance of individual autonomy as the central criterion for valid consent. An enriched model of consent incorporating feminist and communitarian ideas could satisfy the currently accepted criteria for valid consent while also furthering a broader range of community values.

Hearing community voices: public engagement in Australian human embryo research policy, 2005-2007

This paper investigates the recent public policy processes in Australia with regard to embryo research, including the work of the legislative review committee, parliamentary debates, and the production of the National Health and Medical Research Council guidelines for embryo research. We examine various mechanisms used during each of these policymaking stages to engage various publics, and the procedures for balancing conflicting values, which were particularly evident given the strong promotion of biotechnology investment by government side by side with vigorous opposition to certain technologies by segments of the Australian community. We explore the ethical and democratic challenges posed by developments in embryo research as well as various difficulties that arose in engaging the Australian public during these policymaking processes, whether these might prove to be impediments to the development of justifiable and legitimate life sciences research policy in Australia, and what the future prospects are for adequate public engagement in these contentious areas.

Direct-to-consumer advertising under the radar: the need for realistic drugs policy in Australia

Direct‐to‐consumer advertising of prescription medicines (DTCA‐PM) is currently banned in Australia. DTCA‐PM is thought to increase health‐care costs by increasing demand for drugs that are both expensive and potentially harmful. However, DTCA‐PM is occurring in Australia despite the current prohibition. We argue that successful regulation of the practice has been undermined as a result of changes brought about by the ongoing communications revolution, the increasing centrality of patient choice in medical decision‐making and the impossibility of drawing and maintaining a sharp distinction between information and advertising. The prohibition is further threatened by recent international trade agreements. These factors make DTCA‐PM inevitable and legislative and professional bodies need to acknowledge this to create a more effective health‐care policy.

Religious Perspectives on Abortion and a Secular Response

This paper concerns the medical, religious, and social discourse around abortion. The primary goal of this paper is to better understand how seven of the world’s major religious traditions (Roman Catholic, Lutheran, Jewish, Islamic, Buddhist, Confucian, and Hindu) address abortion ‘in the clinic’. We do not aim to critique these commentaries but to draw out some of the themes that resonate through the commentaries and place these within complex social contexts. We consider the intersection of ontology and morality; the construction of women’s selfhood; the integration of religious beliefs and practices in a secular world. We suggest that for many women, religious doctrine may be balanced with secular logic as both are important and inextricably linked determinants of decision making about the termination of pregnancy.