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Abstract:
The IAB Presidential Address was delivered by Alexander Capron to the internationally gathered audience at the Closing Ceremony of the 8th World Congress of Bioethics, Beijing on 9th August 2006.

Abstract:
This article highlights major results of a study into the ethical norms and rules governing biobanks. After describing the methodology, the findings regarding four topics are presented: (1) the ownership of human biological samples held in biobanks; (2) the regulation of researchers’ use of samples obtained from biobanks; (3) what constitutes “collective consent” to genetic research, and when it is needed; and (4) benefit sharing and remuneration of research participants. The paper then summarizes key lessons to be drawn from the findings and concludes by reflecting on the importance of such empirical research to inform future governance norms and practices.

Abstract:
While the right to privacy is not a single concept, many disparate aspects coalesce in a basic interest all persons have in controlling the direction and content of their lives, the way in which they experience their lives, and the way in which their lives are perceived by others. This interest in self-determination, which serves important social interests, finds strong support in common and constitutional law, subject to limitations imposed in the name of a free press. Obtaining and using information about our genetic make-up implicates the right of privacy both because a deterministic view of the findings from genetic tests may undermine our exercise of self-authorship and because access by others--such as insurance companies--to such data (like access to other medical information) alters how they regard and treat us. While gene testing is unlikely to play a role in most health insurance for practical as well as principled reasons, companies issuing life insurance policies may face competitive pressures to obtain and use the results of the growing number of gene tests. Several states have taken steps to restrict insurers' ability to use genetic information in reviewing applications. It seems justifiable to prevent insurers from mandating that applicants undergo genetic screening (at least on an interim basis, when such data are of dubious actuarial significance and trench so deeply on important individual interests in privacy), but as more validated (that is, nonexperimental) gene tests become available, insurers will need to obtain and use any test results possessed by applicants.

Abstract:
Despite both biomedicine's deep involvement with research and the law's renewed interest in pragmatism and empiricism, the policies that have been put in place to resolve bioethical issues are characterized by the absence of any evidence of effectiveness before (and usually even after) their adoption. After examining three ways the law relates to bioethics -- through seminal contributions to the field's content and analytic method, by defining the domain of bioethics to encompass public policy and not just clinical practice, and through the reciprocal interactions whereby the law (typically, legislation or regulation; sometimes, executive or judicial decisions) affects and is affected by bioethical issues -- the article turns to one bioethics area, decisionmaking at the end of life, where far-reaching policies have been adopted, unconstrained by the lack of social science research, in order to explicate why policymaking in bioethics has favored abstract principles over empirical findings. This situation is perhaps not surprising when policymaking is undertaken by courts (as has been true, for example, about the forgoing of life-sustaining treatment for permanently unconscious patients, and about physician assistance to terminally ill patients who want to commit suicide), but legislation authorizing the use of healthcare advance directives and requiring that they be brought to patients' attention has also been adopted nationally without evidence about the efficacy or appropriateness of one approach or another. Among the reasons are the constitutionalization of bioethics, the domination of political ideology on many bioethics issues, confusion over legislative facts, and the limited amount of data that social scientists have provided.