Science Studies—What is to Be Done

Abstract

Consider a new treatment that was claimed to be capable of greatly improving the quality of life for those receiving it. Not only are recipients left feeling better in the short run, but they are also better able to manage their own health behavior in the long run. On the other hand, the treatment can have serious side effects, including agitation, anxiety, and misdirected fears, along with the psychogenic disorders arising from such stresses. It might even induce self-injurious behavior. Administering such a treatment should require a deliberate decision to the effect that its expected benefits outweigh its risks. When potential recipients of the treatment are mentally competent, the decisionmaking process should be a participatory one, with full sharing of relevant information (in a comprehensible format), ample opportunity to reflect on the implications of possible choices (with, perhaps, the help of a disinterested counselor), and a noncoercive setting, allowing recipients to seek the course of action in their own best interests. The outcome of such a process might be construed as representing informed consent to the risks of the treatment.' Where treatment risks are well understood, physicians screen potential recipients for counterindications and monitor them for worrisome responses. Where risks are poorly understood, treatments should be regarded as clinical trials, with intensive study of recipients' responses both to allow rapid intervention in the case of unanticipated side effects and to reduce the uncertainty in future treatment decisions. Whatever the state of knowledge, those administering a treatment should be ready to ameliorate any side effects and perhaps even to provide compensation for them. Such backup together with the regulatory procedures designed to eliminate unreasonably risky treatments promotes greater recipient acceptance of treatments.