Henry S. Richardson

Managing Incidental Findings and Research Results in Genomic Research Involving Biobanks and Archived Data Sets

Biobanks and archived data sets collecting samples and data have become crucial engines of genetic and genomic research. Unresolved, however, is what responsibilities biobanks should shoulder to manage incidental findings and individual research results of potential health, reproductive, or personal importance to individual contributors (using “biobank” here to refer both to collections of samples and collections of data). This article reports recommendations from a 2-year project funded by the National Institutes of Health. We analyze the responsibilities involved in managing the return of incidental findings and individual research results in a biobank research system (primary research or collection sites, the biobank itself, and secondary research sites). We suggest that biobanks shoulder significant responsibility for seeing that the biobank research system addresses the return question explicitly. When reidentification of individual contributors is possible, the biobank should work to enable the biobank research system to discharge four core responsibilities to (1) clarify the criteria for evaluating findings and the roster of returnable findings, (2) analyze a particular finding in relation to this, (3) reidentify the individual contributor, and (4) recontact the contributor to offer the finding. We suggest that findings that are analytically valid, reveal an established and substantial risk of a serious health condition, and are clinically actionable should generally be offered to consenting contributors. This article specifies 10 concrete recommendations, addressing new biobanks as well as those already in existence.Genet Med 2012:14(4):361–384

The Stupidity of the Cost-Benefit Standard

Cost‐benefit analysis (CBA) is often touted as providing not just an important base of information useful in evaluating government programs, but a general standard of public choice that will help insure the wise and intelligent use of our limited resources. This article argues that (wholly apart from its deficiencies in other respects) CBA cannot provide such a standard. Intelligent deliberation is shown to require a willingness and ability to refashion aims in light of new information that comes in. Cost‐benefit analysis, both in general and as a possible standard of choice in the context of democratic lawmaking, makes no room for this crucial aspect of intelligent deliberation. Calling its standard “stupid” for this want of intelligence would be unwarranted if no more intelligent mode of political decision making were available, but there is. The article closes by sketching this superior mode.

Institutionally Divided Moral Responsibility

I am going to be discussing a mode of moral responsibility that anglophone philosophers have largely neglected. It is a type of responsibility that looks to the future rather than the past. Because this forward-looking moral responsibility is relatively unfamiliar in the lexicon of analytic philosophy, many of my locutions will initially strike many readers as odd. As a matter of everyday speech, however, the notion of forward-looking moral responsibility is perfectly familiar. Today, for instance, I said I would be responsible for watching my nieces while they swam. Neglecting this responsibility would have been a moral fault. When people marry, they undertake responsibilities, of moral import, of fidelity and mutual support. When people have children, they accrue moral responsibilities to feed, rear, and educate them. Not all forward-looking responsibilities are moral. While finishing this essay, I have had to keep an eye on a number of my administrative responsibilities, and, while reading it, you may well be occasionally distracted by some of your own. The notion of a responsibility that we accrue or take on, to look out for some range of concerns over some range of the future, is, then, perfectly familiar. Because this common notion of forward-looking responsibility has not been integrated into recent moral theory, however, my philosophical discussion of it will initially seem strange.

Secondary researchers' duties to return incidental findings and individual research results: a partial-entrustment account

Existing attempts to explain why secondary researchers might have any obligation to return findings to the contributors of genetic samples falter because of the lack of any direct interaction between the secondary researchers and the contributors. The partial-entrustment account of these obligations defended here circumvents this problem by explaining how a chain of special responsibilities can be forged even in the absence of any direct interaction.Genet Med 2012:14(4):467–472

Republicanism and democratic injustice

Philip Pettit’s Republicanism: A Theory of Freedom and Government has provided a systematic basis for republican theory in the idea of freedom as non-domination. Can a pure republican view, which confines itself to the normative resources thus afforded, adequately address the full range of issues of social justice? This article argues that while there are many sorts of structural injustice with which a pure republican view can well cope, unfair disparities in political influence, of the kind that Rawls labeled failures of the ‘fair value’ of the equal political liberties, cannot be well addressed by a pure republican view. In arguing the point, the article assesses the reach not only of the core ideal of freedom as non-domination itself, but also of three further layers in Pettit’s republican theory: its suggestion that domination is to be minimized, its account of a set of institutions needed to restrict domination, and its requirement that, to prevent governments from having the power to act arbitrarily and so to dominate, they be made responsive to the common good. Some of these further conceptual resources are shown to be of no help in addressing unfair disparities in political influence, while the ones that are promising are so only because they rely on distinctively liberal ideals, and so depart from a pure republican basis.

The Social Background of Capabilities for Freedoms

Martha Nussbaum has recently argued that “the language of capabilities … gives important precision and supplementation to the language of rights.” This claim raises the question whether the idea of capabilities, as she or as Amartya Sen has developed it, provides a basis for capturing or deriving basic liberties such as the liberty of employment or the freedom of movement. In this essay, I argue that the idea of capabilities is not useful in this way, because it cannot well capture the social, institutional, and deontic aspects of basic liberties. Sens interpretation of capability is particularly limited in this regard, on account of its incorporation of the idea of dispositive freedom (the idea that someones free choice will determine an outcome). While Nussbaums interpretation of capability lacks that limitation, it lacks a way of modeling the kind of guaranteed social status of which basic liberties consist.

Estlund’s Promising Account of Democratic Authority*

David Estlund’s Democratic Authority develops a novel doctrine of “normative consent,” according to which the nonconsent of those with a duty to consent is null. This article suggests that this doctrine can be defended by confining it to contexts involving consent to an authority, which raise distinctive normative challenges, but argues that Estlund’s attempt to deploy the doctrine fails, for it does not provide convincing reasons to think that citizens have any duty to consent. In closing, the article suggests that the doctrine of normative consent might yet do some useful work in a quite different theoretical setting.

Using Final Ends for the Sake of Better Policy-Making

Abstract This paper argues that in order responsibly to make and to evaluate public policies, including development policies, we should think in terms of final ends. This means going beyond simply listing the important goods (or dimensions of goodness or well-being) that we are about by laying out, as best we can, which of them we seek for the sake of which. The paper analyses what it is to seek something for the sake of something else, and thereby the idea of a final end, sought for its own sake, and distinguishes that idea from that of intrinsic (unconditional) goodness. It then illustrates the deliberative power of thinking in terms of final ends in three disparate development-related contexts: that of developing an overall, capabilities-based indicator of well-being; that of project evaluation; and that of addressing a broad policy issue. Reasonable debate about what is to be sought for the sake of what is possible. Only if we attempt to settle what is to be sought for the sake of what do we begin to access the rich information latent in multidimensional accounts of well-being or the good.

Moral Entanglements: Ad Hoc Intimacies and Ancillary Duties of Care *

This paper develops and explores the idea of moral entanglements: the ways in which, through innocent transactions with others, we can unintendedly accrue special obligations to them. More particularly, the paper explains intimacy-based moral entanglements, to which we become liable by accepting another’s waiver of privacy rights. Sometimes, having entered into others’ private affairs for innocent or even helpful reasons, one discovers needs of theirs that then become the focus of special duties of care. The general duty to warn them of their need cannot directly account for the full extent of these duties, but does indicate why a silent retreat is impermissible. The special duties of care importantly rest on a transfer of responsibilities that accompanies the privacy waivers. The result is a special obligation of beneficence that, while grounded in a voluntary transaction, was never voluntarily undertaken. Impartialist views of beneficence cannot capture the relevant phenomena well.

The 125th Anniversary of the Journal

With this issue, we launch our celebration of the 125th anniversary of Ethics. After explaining how we’re doing that, I will review the surprisingly murky question of the journal’s founding, recount some of the journal’s history, and say a few words about where the journal is now. Thanks to the generosity of the publisher, the University of Chicago Press, which has made extra pages available for our 125th volume, we are marking the occasion by publishing four collections of retrospective essays, each focused on one of our first four quarter centuries. ðThe latest quarter century does not yet seem ripe for such retrospective treatment.Þ Thus, each issue of the present volume, starting with this one, will contain over a dozen short retrospective essays, each targeted on a different article published during the relevant time period. Four or five of these, in each period, were commissioned by the journal. These are slightly longer and are printed first. The remaining essays, having resulted from proposals generated in response to our call, represent the fascinating fruits of crowdsourcing. We received many more such proposals than we were able to accept. We are sorry that we did not have room to print more. The effort has shed surprising new light on some classic essays from the journal’s earlier days and has unearthed many hidden gems. In commissioning, selecting, and reviewing all these retrospective essays, the journal is fortunate to have drawn on an ideal team of people. Four of our already hard-working associate editors agreed to take on the additional work of serving on the 125th anniversary committee: Cheshire Calhoun, Roger Crisp, Julia Driver, and Connie Rosati. I am very grateful to them for their willingness to do this and for the gusto with which they threw themselves into the task. Each of them paired up with an external guest editor to select the papers for a given quarter century. The essays on the first quarter century ð1890–1915Þ, printed in this issue, were edited by John Skorupski and Julia Driver. The essays on the second quar-