In 2012, a new and promising gene manipulation technique, CRISPR-Cas9, was announced that seems likely to be a foundational technique in health care and agriculture. However, patents have been granted. As with other technological developments, there are concerns of social justice regarding inequalities in access. Given the technologies’ “foundational” nature and societal impact, it is vital for such concerns to be translated into workable recommendations for policymakers and legislators. Colin Farrelly has proposed a moral justification for the use of patents (...) to speed up the arrival of technology by encouraging innovation and investment. While sympathetic to his argument, this article highlights a number of problems. By examining the role of patents in CRISPR and in two previous foundational technologies, we make some recommendations for realistic and workable guidelines for patenting and licensing. (shrink)

The revolutionary potential of the CRISPR-Cas9 gene editing technique has created a resurgence in enthusiasm and concern in genetic research perhaps not seen since the mapping of the human genome at the turn of the century. Some such concerns and anxieties revolve around crossing lines between somatic and germline interventions as well as treatment and enhancement applications. Underpinning these concerns, there are familiar concepts of safety, unintended consequences and damage to genetic identity and the creation of designer children through pursuing (...) human enhancement and eugenics. In the policy realm, these morally laden distinctions and anxieties are emerging as the basis for making important and applied measures to respond to the fast-evolving scientific developments. This paper argues that the dominant normative framing for such responses is insufficient for this task. This paper illustrates this insufficiency as arising from a continued reliance on misleading genetic essentialist assumptions that generate groundless speculation and over-reactionary normative responses. This phenomenon is explicit with regard to prospective human genetic enhancements. While many normative theorists and state-of-the-art reports continue to gesture toward the influence of environmental and social influences on a person and their traits and capacities, this recognition does not extend to the substance of the arguments themselves which tend to revert to the debunked genetic determinist framework. Given the above, this paper argues that there is a pressing need for a more central role for sociological input into particular aspects of this “enhancement myth” in order to give added weight, detail and substance to these environmental influences and influence from social structures. (shrink)

Rawls’ principle of fair equality of opportunity has been regularly discussed and criticized for being inadequate regarding natural inequalities. In so far as this egalitarian goal is sound, the purpose of the paper is to see how the prospect of radical genetic intervention might affect this particular inadequacy. I propose that, in a post-genetic setting, an appropriate response would be to extend the same rules regulating societal inequalities to a regulation of comparable genetic inequalities. I defend this stance against recent (...) arguments from the authors of From Chance to Choice and from Colin Farrelly’s alternative of the genetic difference principle. (shrink)

Given the constraints of human partiality and the possible social benefits of widespread genetic technology, allowing for incentive-based inequalities in access in order to boost innovation and diffusion may be the only feasible option available to the post-genomics egalitarian planner. In light of the prevailing ethos that exists in the non-ideal circumstances of society, an initial post-genomics egalitarian goal for all to have equivalent access to comparable genetic interventions seems very unlikely to succeed.While I outline how the initial egalitarian goal (...) can entail either overly prohibitive or overly idealistic prescriptions, I argue that the more recent non-ideal focus has not given adequate attention to how different distributions in genetic access may not only be constrained by, but may also affect the prevailing ethos for better or worse, in turn affecting the range of feasible options into the future. I analyse Farrelly’s Lax Genetic Difference Principle , as an exemplar of a non-ideal post-genomics theorising, and evaluate it in terms of its anticipated effects on the egalitarian ethos. I argue that achieving a more just distribution of access to genetic technologies, by principles that take into account genuine non-ideal considerations, requires a greater awareness of such effects.Finally, I briefly sketch a framework for ‘ethos-proofing’ non-ideal principles, in terms of access to genetic technologies, particularly enhancements, with regard to maintaining and fostering such an egalitarian ethos. (shrink)

The effective collection and management of personal data of rapidly migrating populations is important for ensuring adequate healthcare and monitoring of a displaced peoples’ health status. With developments in ICT data sharing capabilities, electronic personal health records (ePHRs) are increasingly replacing less transportable paper records. ePHRs offer further advantages of improving accuracy and completeness of information and seem tailored for rapidly displaced and mobile populations. Various emerging initiatives in Europe are seeking to develop migrant‐centric ePHR responses. This paper highlights their (...) importance and benefits, but also identifies a number of significant ethical, legal and social issues (ELSI) and challenges to their design and implementation, regarding (1) the kind of information that should be stored, (2) who should have access to information, and (3) potential misuse of information. These challenges need to be urgently addressed to make possible the beneficial use of ePHRs for vulnerable migrants in Europe. (shrink)

In most discussions of the social justice implications of new genetic technologies, enhancements are considered to be highly contentious. This is particularly so when we speak of enhancements that benefit the recipient in positional terms and enhancements that are germ-line and which can be passed on to future generations. I argue that the egalitarian reluctance, as displayed by Max Mehlman (2003:2005), to permitting enhancements is overblown. Recent writings from Buchanan (2008) and Farrelly (2004) highlight a more positive, context-dependent, role for (...) permitting the socio-economically advantaged the freedom to gain access to enhancements, including enhancements of traits associated with positional or competitive advantage. I argue that this reasoning also (necessarily) applies to germ-line enhancements or, at least, to 'effective germ-line enhancements.' In other words, I argue that such enhancements should be more seriously considered in terms of this positive context-dependent role. Nevertheless, this support is not unqualified. I critically re-examine concerns regarding the notion of the genetic underclass and I raise some worries about the possible adverse consequence of such a regulatory framework on sustaining the required egalitarian ethos. Importantly, such worries (and suggestions to address them) will be focused on the adverse effects of inequalities, rather than germ-line enhancements themselves. (shrink)

Potential applications of genome editing in assisted reproductive technology (ART) raise a vast array of strong opinions, emotional reactions and divergent perceptions. Acknowledging the need for caution and respecting such reactions, we observe that at least some are based on either a misunderstanding of the science or misconceptions about the content and flexibility of the existing legal frameworks. Combining medical, legal and ethical expertise, we present and discuss regulatory responses at the national, European and international levels. The discussion has an (...) EU starting point and is meant as a contribution to the general international regulatory debate. Overall, this paper concludes that gene editing technologies should not be regulated autonomously. Rather, potential uses should be regulated under general, existing frameworks and where applicable by reference to sufficiently equivalent technologies and techniques already subject to specific regulation. To be clear, we do not argue for the hasty introduction of gene editing as a reproductive treatment option in the immediate future. We call for caution with regard to overreaching moratoria and prohibitions that will also affect basic research. We recommend flexible regulations that allow for further responsible research into the potential development of the technology. We call for an open and inclusive debate and argue that scientific communication should claim a more prominent role to counter the danger of widespread misinformation. A high level of transparency and accuracy should guide scientific communication while simultaneously global‐scale responsibility and governance should be fostered by promoting cross‐disciplinary thinking and multi‐level stakeholder involvement in legal and regulatory processes. (shrink)

Potential applications of genome editing in assisted reproductive technology (ART) raise a vast array of strong opinions, emotional reactions and divergent perceptions. Acknowledging the need for caution and respecting such reactions, we observe that at least some are based on either a misunderstanding of the science or misconceptions about the content and flexibility of the existing legal frameworks. Combining medical, legal and ethical expertise, we present and discuss regulatory responses at the national, European and international levels. The discussion has an (...) EU starting point and is meant as a contribution to the general international regulatory debate. Overall, this paper concludes that gene editing technologies should not be regulated autonomously. Rather, potential uses should be regulated under general, existing frameworks and where applicable by reference to sufficiently equivalent technologies and techniques already subject to specific regulation. To be clear, we do not argue for the hasty introduction of gene editing as a reproductive treatment option in the immediate future. We call for caution with regard to overreaching moratoria and prohibitions that will also affect basic research. We recommend flexible regulations that allow for further responsible research into the potential development of the technology. We call for an open and inclusive debate and argue that scientific communication should claim a more prominent role to counter the danger of widespread misinformation. A high level of transparency and accuracy should guide scientific communication while simultaneously global‐scale responsibility and governance should be fostered by promoting cross‐disciplinary thinking and multi‐level stakeholder involvement in legal and regulatory processes. (shrink)