Bioemdical research ethics and policy

Increasingly, a range of 'things' (e.g. infrastructure, data, knowledge, bodies, etc.) are configured and/or reconfigured as assets, or capitalized property. Accumulation strategies have changed as a result of this assetization process, which characterizes a particular form of technoscientific capitalism. Rather than entrepreneurial strategies based on commodity production, technoscientific capitalism is increasingly underpinned by rentiership, or the appropriation of value through ownership rights (e.g. intellectual property), monopoly conditions, and regulatory or market devices and practices (e.g. investment dispute courts, exclusivity agreements, etc.). While rentiership and rent-seeking are often presented as negative phenomena (e.g. distorting markets, unearned income) in both neoclassical and Marxist literatures – and much in-between – it is my intention in this paper to unpack rentiership as an increasingly constitutive political-economic process underpinning technoscientific capitalism. Rather than being framed as a problematic 'side-effect' of capitalism, I argue that rentiership can help us to understand how different forms of value extraction are constituted by and come to constitute different forms of technoscience. This has significant analytical, political, and normative implications for understanding the relationship between science, innovation, and business (e.g. how do rentier rationales configure research agendas, how does innovation enable rentiership, what are the consequences for social equity, etc.).

To suggest that modern technology is creating a world where we will one day all be borne via a petri dish is more than a little over the top. It was not too long ago that we were told that the condom would be the downfall of society and bring about The Rapture. In fact as we now know the condom is potentially saving the world from the rapturous embrace of HIV and AIDS. In all the discussions on the impact of modern technology upon our sexual and reproductive lives there is a moral and ethical undertone, some in favour, many more against. This essay shall look at both these sides of the argument and shall attempt to put them into context, especially in light of the recent revelation of the bench-top Ion Proton™ Sequencer and the fresh uproar it has caused. We shall begin by looking at the latest in technology, the bench-top Ion Proton™ Sequencer and analysing whether it should be welcomed or feared. We shall study John A. Robertsons extensive research in this area and discuss the legal and moral implications of genome sequencing and its potential impact on those with disabilities. We shall then follow this by studying the pre-implantation tests which are currently available in an attempt to see if the IP Sequencer will have a positive or negative impact on them. We shall also look at the abortion statistics which are available in regards to both Irish women and women in the UK who seek terminations specifically for the purpose of eradicating a foetus with a disability. The purpose of doing this is to fully understand whether pre-implantation might in fact be a way of preventing a greater harm to a foetus, instead of a lesser harm to an embryo. We shall see if the fear of eugenics is justified or whether Robertson is correct in his stance in relation to this matter, for he suggests that to assume that IVF would eventually ‘trump’ sex is more than a slight exaggeration. When we rationalise our thinking and look at the facts, especially in the case of ‘saviour siblings’ which many feared would lead to an abuse or the technology in order to create ‘designer babies’ or a ‘superior’ child, we begin to see that many of these fears are completely unfounded and created by scaremongering. We shall then look at current twin studies and epigentics in an attempt to rationalise our potential fears in the area of genetics before we analyse our own human moral values. We shall discuss how the changes in our moral understanding have impacted positively upon our sexual and reproductive health.

We consider the implications for the ethical evaluation of research programs of two fundamental changes in the revised research ethical guideline of the Council for International Organizations of Medical Sciences. The first is the extension of scope that follows from exchanging “biomedical” for “health-related” research, and the second is the new evaluative basis of “social value,” which implies new ethical requirements of research. We use the example of antibiotic resistance interventions to explore the need to consider what we term the pragmatic risks of such interventions to evaluate the so- cial value of certain kinds of health-related research. These (pragmatic) risks severely threaten the social value of interventions in every area where human and social re- sponses significantly impact on their effectiveness. Thus, the social value of health-re- lated research needed to demonstrate its effectiveness depends on the successful management of such risks. Research designed to take into account pragmatic risks also gives rise to similar types of risks, and the potential for social value in light of those risks needs to be considered in ethical reviews based on the new guidelines. We argue that, to handle this new expanded task, the international system of research ethical review addressed by the guidelines needs institutional development. In particular, we consider lifting research ethical review to a level closer to actual health policy making..

Current policy in many countries, including the UK, is that tissue samples used for medical research should be treated as ‘gifts’ from patients. This approach is increasingly criticised. Among the solutions proposed is introducing an individual property rights regime for tissue donors. We report a qualitative study of the views of 79 family members of children with cancer and 54 health professionals in the area of paediatric oncology. We argue that systems of governance and regulation need to respect the values of donors. A charitable trust model might be more consistent with the values of solidarity and reciprocity expressed by the study participants than an individual property rights approach.