Susan Wolf

Successful preimplantation genetic diagnosis to avoid creating a child affected by a genetically-based disorder was reported in 1989. Since then PGD has been used to biopsy and analyze embryos created through in viuo fertilization to avoid transferring to the mother’s uterus an embryo affected by a mutation or chromosomal abnormality associated with serious illness. PGD to avoid serious and early-onset illness in the child-to-be is widely accepted. PGD prevents gestation of an affected embryo and reduces the chance that the parents will be faced with a difficult decision of whether to terminate the pregnancy. More controversial have been PGD to select the sex of the child-to-be for “family balancing”, PGD for mere susceptibility to disease and for late-onset disorders such as Alzheimer diseas, and most controversially, PGD to create a donor child who is Human Leukocyte Antigen (HLA-matched with a preexisting sibling in need of stem cell transplant.

Most people, including philosophers, tend to classify human motives as falling into one of two categories: the egoistic or the altruistic, the self-interested or the moral. According to Susan Wolf, however, much of what motivates us does not comfortably fit into this scheme. Often we act neither for our own sake nor out of duty or an impersonal concern for the world. Rather, we act out of love for objects that we rightly perceive as worthy of love--and it is these actions that give meaning to our lives. Wolf makes a compelling case that, along with happiness and morality, this kind of meaningfulness constitutes a distinctive dimension of a good life. Written in a lively and engaging style, and full of provocative examples, Meaning in Life and Why It Matters is a profound and original reflection on a subject of permanent human concern

Oversight of human gene transfer research presents an important model with potential application to oversight of nanobiology research on human participants. Gene therapy oversight adds centralized federal review at the National Institutes of Health's Office of Biotechnology Activities and its Recombinant DNA Advisory Committee to standard oversight of human subjects research at the researcher's institution and at the federal level by the Office for Human Research Protections. The Food and Drug Administration's Center for Biologics Evaluation and Research oversees human gene transfer research in parallel, including approval of protocols and regulation of products. This article traces the evolution of this dual oversight system; describes how the system is already addressing nanobiotechnology in gene transfer: evaluates gene therapy oversight based on public opinion, the literature, and preliminary expert elicitation; and offers lessons of the gene therapy oversight experience for oversight of nanobiotechnology

Incidental fndings of potential medical signifcance are seen in approximately 5-8 percent of asymptomatic subjects and 16 percent of symptomatic subjects participating in large computed tomography colonography studies, with the incidence varying further by CT acquisition technique. While most CTC research programs have a well-defned plan to detect and disclose IFs, such plans are largely communicated only verbally. Written consent documents should also inform subjects of how IFs of potential medical signifcance will be detected and reported in CTC research studies

The current explosion of genetic knowledge and the rapid proliferation of genetic tests has rightly provoked concern that we are approaching a future in which people will be labeled and disadvantaged based on genetic information. Indeed, some have already suffered harm, including denial of health insurance. This concern has prompted an outpouring of analysis. Yet almost all of it approaches the problem of genetic disadvantage under the rubric of “genetic discrimination.”This rubric is woefully inadequate to the task at hand. It ignores years of commentary on race and gender demonstrating the limits of antidiscrimination analysis as an analytic framework and corrective tool. Too much discussion of genetic disadvantage proceeds as if scholars of race and gender had not spent decades critiquing and developing antidiscrimination theory.Indeed, there are multiple links among race, gender, and genetics. Dorothy Roberts has discussed the historical links between racism and genetics, while she and others have begun to map connections between gender and genetics.

No consensus yet exists on how to handle incidental fnd-ings in human subjects research. Yet empirical studies document IFs in a wide range of research studies, where IFs are fndings beyond the aims of the study that are of potential health or reproductive importance to the individual research participant. This paper reports recommendations of a two-year project group funded by NIH to study how to manage IFs in genetic and genomic research, as well as imaging research. We conclude that researchers have an obligation to address the possibility of discovering IFs in their protocol and communications with the IRB, and in their consent forms and communications with research participants. Researchers should establish a pathway for handling IFs and communicate that to the IRB and research participants. We recommend a pathway and categorize IFs into those that must be disclosed to research participants, those that may be disclosed, and those that should not be disclosed

Debate over the relationship of law and bioethics is growing - what the relationship has been and what it should be in the future. While George Annas has praised law and rights-talk for creating modern bioethics, Carl Schneider has instead blamed law for hijacking bioethics and stunting moral reflection. Indeed, as modern bioethics approaches the 40-year mark, historians of bioethics are presenting divergent accounts. In one account, typified by Albert Jonsen, bioethics largely grew out of philosophy and theology, not law. In another account, law has deeply shaped bioethics from the start, forging its central commitment to the rights of patients and research subjects and the fields imposition of broad fiduciary responsibilities on health care professionals and researchers.In addition to debating how to properly describe laws historical relationship to bioethics, commentators have argued over whether laws influence in bioethics is now good or bad.

Debate over the proper use of racial and ethnic categories in biomedical research has raged in recent years. With the Human Genome Project showing that human beings are overwhelmingly alike genetically, exhibiting more genetic variation within supposed “races” than between them, many have come to doubt the scientific utility of such categories. Yet federal authorities use Directive 15 from the Office of Management and Budget to mandate the continued use of such categories in research. Moreover, researchers studying health disparities argue that data collection using racial and ethnic categories is necessary to determine whether conditions and care vary by race and ethnicity. Epidemiologists also defend the use of racial and ethnic categories to understand contributors to disease such as the stress of experiencing racial prejudice and reduced access to care because of bias.

This paper argues that an adequate conception of a good life should recognize, in addition to happiness and morality, a third dimension of meaningfulness. It further proposes that we understand meaningfulness as involving both a subjective and an objective condition, suitably linked. Meaning arises when subjective attraction meets objective attractiveness. In other words one’s life is meaningful insofar as one is gripped or excited by things worthy of one’s love, and one is able to do something positive about it. The paper concludes with some speculations about how this conception of meaningfulness might help to explain the conditions under which social volunteering can be especially rewarding

Returning genetic research results to relatives raises complex issues. In order to inform the U.S. debate, this paper analyzes international law and policies governing the sharing of genetic research results with relatives and identifies key themes and lessons. The laws and policies from other countries demonstrate a range of approaches to balancing individual privacy and autonomy with family access for health benefit, offering important lessons for further development of approaches in the United States.

Philosophers frequently distinguish between causal responsibility and moral responsibility, but that distinction is either ambiguous or confused. We can distinguish between causal responsibility and a deeper kind of responsibility, that licenses reactive attitudes and judgments that a merely causal connection would not, and we can distinguish between holding people accountable for their moral qualities and holding people accountable for their nonmoral qualities. But, because we sometimes hold people deeply responsible for nonmoral qualities of behavior and character, these distinctions are not the same. A number of recent accounts of responsibility identify deep responsibility with moral responsibility and in consequence miss some key features of the concept of which they are trying to give an account. A view that distinguishes two levels of responsibility, according to which the conditions of attributability are weaker than the conditions of accountability, might seem to account for a kind of non..

The topic of self-interest raises large and intractable philosophical questions–most obviously, the question “In what does self-interest consist?” The concept, as opposed to the content of self-interest, however, seems clear enough. Self-interest is interest in one's own good. To act self-interestedly is to act on the motive of advancing one's own good. Whether what one does actually is in one's self-interest depends on whether it actually does advance, or at least, minimize the decline of, one's own good. Though it may be difficult to tell whether a person is motivated by self-interest in a particular instance, and difficult also to determine whether a given act or decision really is in one's self-interest, the meaning of the claims in question seems unproblematic. My main concern in this essay is to make a point about the content of self-interest. Specifically I shall put forward the view that meaningfulness, in a sense I shall elaborate, is an important element of a good life. It follows, then, that it is part of an enlightened self-interest that one wants to secure meaning in one's life, or, at any rate, to allow and promote meaningful activity within it. Accepting this substantial conception of self-interest, however, carries with it a curious consequence: the concept of self-interest which formerly seemed so clear begins to grow fuzzy. Fortunately, it comes to seem less important as well. In Reasons and Persons, Derek Parfit distinguishes three sorts of theories about self-interest–hedonistic theories, preference theories, and what he calls “objective-list theories." Hedonistic theories hold that one's good is a matter of the felt quality of one's experiences

The ancient Greeks subscribed to the thesis of the Unity of Virtue, according to which the possession of one virtue is closely related to the possession of all the others. Yet empirical observation seems to contradict this thesis at every turn. What could the Greeks have been thinking of? The paper offers an interpretation and a tentative defence of a qualified version of the thesis. It argues that, as the Greeks recognized, virtue essentially involves knowledge ? specifically, evaluative knowledge of what matters. Furthermore, such knowledge is essentially holistic. Perfect and complete possession of one virtue thus requires the knowledge that is needed for the possession of every other virtue. The enterprise of trying to reconcile the normative view embodied in this conception of virtue with empirical observation also serves as a case study for the field of moral psychology in which empirical and normative claims are often deeply and confusingly intertwined.1

Large-scale sequencing tests, including whole-exome and whole-genome sequencing, are rapidly moving into clinical use. Sequencing is already being used clinically to identify therapeutic opportunities for cancer patients who have run out of conventional treatment options, to help diagnose children with puzzling neurodevelopmental conditions, and to clarify appropriate drug choices and dosing in individuals. To evaluate and support clinical applications of these technologies, the National Human Genome Research Institute and National Cancer Institute have funded studies on clinical and research sequencing under the Clinical Sequencing Exploratory Research program as well as studies on return of results. Most of these studies use sequencing in real-world clinical settings and collect data on both the application of sequencing and the impact of receiving genomic findings on study participants. They are occurring in the context of controversy over how to obtain consent for exome and genome sequencing.