While bioethics as a field has concerned itself with methodological issues since the early years, there has been no systematic examination of how ethics is incorporated into research on the Ethical, Legal and Social Implications of the Human Genome Project. Yet ELSI research may bear a particular burden of investigating and substantiating its methods given public funding, an explicitly cross-disciplinary approach, and the perceived significance of adequate responsiveness to advances in genomics. We undertook a qualitative content analysis of a sample (...) of ELSI publications appearing between 2003 and 2008 with the aim of better understanding the methods, aims, and approaches to ethics that ELSI researchers employ. We found that the aims of ethics within ELSI are largely prescriptive and address multiple groups. We also found that the bioethics methods used in the ELSI literature are both diverse between publications and multiple within publications, but are usually not themselves discussed or employed as suggested by bioethics method proponents. Ethics in ELSI is also sometimes undistinguished from related inquiries. (shrink)

Growing ties to private industry have prompted many to question the impartiality of academic bioethicists who receive financial support from for-profit corporations in exchange for ethics-related services and research. To the extent that corporate sponsors may view bioethics as little more than a way to strengthen public relations or avoid potential controversy, close ties to industry may pose serious threats to professional independence. New sources of support from private industry may also divert bioethicists from pursuing topics of greater social importance, (...) such as the needs of medically underserved communities. To inform ongoing debates about the financing of bioethics and its transparency to those concerned about potential sources of bias, we examined funding disclosures appearing in original research reports in major bioethics journals. Reviewing research published over a 15-year period, we found little evidence that for-profit corporations are influencing bioethics research directly. Instead, we found evidence that a great number of organizations, both public and private, support bioethics research. These findings suggest that worries about the cooption of bioethics research by a few interested stakeholders are greatly overstated and undersupported by available data. (shrink)

As in science, so in bioethics: if prohibiting conflicts of interest is not feasible, rigorous requirements for disclosure can at least manage them.

This article criticizes recent suggestions that the current ELSI research field should accommodate a new direction towards a ‘post-ELSI’ agenda. Post-ELSI research seeks to avoid the modernist division of responsibility for technical and social issues said to characterize ELSI research. Collaboration and integration are consequently the key terms of post-ELSI strategies that are to distinguish it from ELSI strategies. We argue that this call for a new direction relies on an inadequate generalized analysis of ELSI research as modern that will (...) affect the construal of post-ELSI strategies. We are concerned that the call for post-ELSI shift will exclude imaginative proposals and intellectual freedom by narrowing down the scope and methodologies of ELSI and thereby missing opportunities to play a critical and constructive normative role. Instead of framing current trends in ELSI research as a radical and progressive shift from ELSI to post-ELSI, we suggest an alternative story of expansion and diversification described in terms of a drift from ELSA 1 to ELSA 2, pertaining to acronyms in use in Europe. ELSI research has never been modern. It has been experimenting from the very start on ways to mesh the works of humanist, social and natural scientist in order to bridge and build alignments of emerging scientific and societal goals and matters of concern. The development from ELSA 1 to ELSA 2 expands in our account the range of intellectual and methodological capacities of analysis and engagement of complex and dynamic science-society relationships. We present three areas of ELSA expertise to illustrate that the expertise within the field builds on scholarly achievements within the humanities, social sciences as well as the natural sciences. The plurality of disciplinary background of ELSA researchers represents a valuable diversity that enables mutual criticism and formulations of complementary approaches that together constitute a viable ELSA field. (shrink)