Susan Dodds

Vulnerability in Research Ethics: a way forward

Several foundational documents of bioethics mention the special obligation researchers have to vulnerable research participants. However, the treatment of vulnerability offered by these documents often relies on enumeration of vulnerable groups rather than an analysis of the features that make such groups vulnerable. Recent attempts in the scholarly literature to lend philosophical weight to the concept of vulnerability are offered by Luna and Hurst. Luna suggests that vulnerability is irreducibly contextual and that Institutional Review Boards (Research Ethics Committees) can only identify vulnerable participants by carefully examining the details of the proposed research. Hurst, in contrast, defines the vulnerable as those especially at risk of incurring the wrongs to which all research ethics participants are exposed. We offer a more substantive conception of vulnerability than Luna but one that gives rise to a different rubric of responsibilities from Hursts. While we understand vulnerability to be an ontological condition of human existence, in the context of research ethics, we take the vulnerable to be research subjects who are especially prone to harm or exploitation. Our analysis rests on developing a typology of sources of vulnerability and showing how distinct sources generate distinct obligations on the part of the researcher. Our account emphasizes that the researchers first obligation is not to make the research participant even more vulnerable than they already are. To illustrate our framework, we consider two cases: that of a vulnerable population involved in international research and that of a domestic population of people with diminished capacity.

Depending on Care: Recognition of Vulnerability and the Social Contribution of Care Provision

People who are paid to provide basic care for others are frequently undervalued, exploited and expected to reach often unrealistic standards of care. I argue that appropriate social recognition, support and fair pay for people who provide care for those who are disabled, frail and aged, or suffering ill health that impedes their capacity to negotiate daily activities without support, depends on a reconsideration of the paradigm of the citizen or and moral agent. I argue that by drawing on the ideas of human vulnerability and dependency as central to our personhood, a more realistic conception of selves, citizens and persons can be developed that better recognises the inevitability of human dependency and the social value of care work. I also indicate the significance of this vulnerability-focussed view for ethical evaluation of the emotional aspects of care relationships.

Justice and indigenous land rights

Political theorists have begun to re-examine claims by indigenous peoples to lands which were expropriated in the course of sixteenth-eighteenth century European expansionism. In Australia, these issues have captured public attention as they emerged in two central High Court cases: Mabo (1992) and Wik (1996), which recognize pre-existing common law rights of native title held by indigenous people prior to European contact and, in some cases, continue to be held to the present day. The theoretical significance of the two Australian cases is examined and the links drawn out between the current debate about Aboriginal land rights in Australia and the wider philosophical debate about indigenous land rights, property rights, and indigenous justice as characterized by Jeremy Waldron and James Tully. Justice towards indigenous groups requires substantial acknowledgement and recognition of the values and institutions of the relevant indigenous group; yet, these values and institutions may not readily fall under t...

Avoiding Empty Rhetoric: Engaging Publics in Debates About Nanotechnologies

Despite the amount of public investment in nanotechnology ventures in the developed world, research shows that there is little public awareness about nanotechnology, and public knowledge is very limited. This is concerning given that nanotechnology has been heralded as ‘revolutionising’ the way we live. In this paper, we articulate why public engagement in debates about nanotechnology is important, drawing on literature on public engagement and science policy debate and deliberation about public policy development. We also explore the significance of timing in engaging the public, and we make some suggestions concerning how to effectively engage publics. Our conclusions indicate the significance of scientific researchers, policy makers and representative consumer groupings in public reasoning towards a better public policy framework for debate about technological development.

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.

Is the Australian HREC system sustainable

AbstractIn Australia, Human Research Ethics Committees (HRECs) have a vital role to play—as the primary institutional mechanism for ethical review of research—in protecting research participants, and promoting ethical research. Their ability to act effectively in this role is currently threatened by the limited support they receive and their burgeoning workloads. In this discussion paper, I trace some of the factors contributing to what I describe as a resource crisis in human research ethics. I suggest a review of the working of HRECs to canvas a range of alternatives which might serve to redress this crisis, so as to ensure the continued effectiveness of HRECs in protecting participants and promoting ethical research.

Women, Commodification, and Embryonic Stem Cell Research

Many of those who seek the regulation of human embryonic stem cell research express concern that human cells, tissues, embryos, and gametes are becoming commodified. To understand this concern, it is first necessary to consider both the role of market forces in human stem cell research and current regulation and legislation covering that research. This work analyzes the debate about commodification from a feminist bioethical perspective informed by Marx’s theory of commodification and exploitation. Much of the discussion about commodification of human body parts, reproductive capacity, and reproductive tissues draws on the work of Anderson and Radin. I examine the capacity of those arguments to address the issue of commodification as it arises in human embryonic stem cell research. I then critically assess Dickenson’s contribution to this debate, in which she argues that the current regulation of stem cell research is unjust toward women because it alienates them from their reproductive labor. I agree that one criticism of the commodification of human reproductive capacities is the alienation of labor. A more significant critique of the commodification of human reproductive tissues in stem cell research can be discerned through closer attention to the kinds of resource or product being commodified. Women’s reproductive capacities are inevitably involved in generating the constituents of human life (ova, fetuses, and embryos). The lack of an appropriate means for recognizing the contribution of women’s bodily capacities in the commodification of the resources they provide to stem cell research exemplifies an inherent contradiction of capitalist commodification.

Print Me an Organ? Ethical and Regulatory Issues Emerging from 3D Bioprinting in Medicine

Recent developments of three-dimensional printing of biomaterials (3D bioprinting) in medicine have been portrayed as demonstrating the potential to transform some medical treatments, including providing new responses to organ damage or organ failure. However, beyond the hype and before 3D bioprinted organs are ready to be transplanted into humans, several important ethical concerns and regulatory questions need to be addressed. This article starts by raising general ethical concerns associated with the use of bioprinting in medicine, then it focuses on more particular ethical issues related to experimental testing on humans, and the lack of current international regulatory directives to guide these experiments. Accordingly, this article (1) considers whether there is a limit as to what should be bioprinted in medicine; (2) examines key risks of significant harm associated with testing 3D bioprinting for humans; (3) investigates the clinical trial paradigm used to test 3D bioprinting; (4) analyses ethical questions of irreversibility, loss of treatment opportunity and replicability; (5) explores the current lack of a specific framework for the regulation and testing of 3D bioprinting treatments.

Gender, ageing, and injustice: social and political contexts of bioethics

There has been considerable work in bioethics addressing injustice and gender oppression in the provision of healthcare services, in the interaction between client and healthcare professional, and in allocation of healthcare services within a particular hospital or health service. There remain several sites of continued injustice that can only be addressed adequately from a broader analytical perspective, one that attends to the social and political contexts framing healthcare policy and practice. Feminist bioethicists have a strong track record in providing this kind of analysis. Using current Australian aged care and welfare policy this paper demonstrates some of the ways in which issues of gender, age, and social inequity shape bioethical debate, policy, and practice in the areas of aged care and welfare provision. The author develops an argument that demonstrates the gender injustice underlying health care and welfare policy. This argument recognises the inevitability of human dependency relations, and questions the adequacy of current political theories to address the requirements for full and equal citizenship. The author shows that an adequate analysis of the ethics of aged healthcare depends on sufficient consideration of the social and political context within which healthcare policy is framed and an adequate understanding of human dependency.

Human research ethics in Australia: Ethical regulation and public policy

AbstractThis paper critically assesses the National Statement on Ethical Conduct in Research Involving Humans as a piece of public policy concerning the regulation of research ethics. Two of the stated purposes of the National Statement are the provision of a “national reference point for ethical consideration relevant to all research involving humans” and the “protection of the welfare and rights of participants in research”. The process of Human Research Ethics Committee review of research proposals is evaluated in light of these two purposes. I argue that the approach taken in the National Statement has the potential to meet these purposes, but that, in its current form the statement does not provide sufficient guidance to HRECs to properly fulfil either purpose. For the National Statement to meet its promise, it needs to provide greater direction to HRECs which is properly informed by understanding of the full array of research involving human participants.