Self-regulation: who needs it?

Abstract

Two g r o u p s h a v e d e v e l o p ed new codes of ethics for health care Web sites in the past year. One group, Health Internet Ethics, or Hi-Ethics, represents a coalition of the most widely used Internet health sites and content providers. Its members met several times over a period of months to draft and revise their principles, which were released 8 May 2000. The other group, the eHealth Ethics Initiative, represents an ongoing project that was started when the nonprofit Internet Healthcare Coalition called an Ethics Summit meeting in January 2000. The meeting brought together representatives from industry, academe, government, medicine, law, and patient and consumer groups, who created a draft through a collaborative process that included a public comment period. The resulting eHealth Code of Ethics was released at a press conference on Capitol Hill 24 May 2000, with Sens. James Jeffords (R-VT) and Joseph Lieberman (D-CT) present. Both codes address common issues for health care Web sites, such as privacy of consumer health information, quality of content, disclosure of financial conflicts of interest, and delivery of health care services online. Almost as soon as they were announced, the codes drew public comment on their limitations. Janlori Goldman, a noted privacy advocate, criticized the Hi-Ethics Code for not being specific enough in the area of enforcement and consumer recourse. Glen McGee, a bioethicist, complained that neither of the two new ethics codes applied to anyone who wanted to ignore them. He stated that “the most dangerous thing in Internet health care may be simple codes of ethics.” The emergence of critics did not surprise anyone involved in developing the codes. Because of the lengthy history in Washington of devising self-regulatory schemes as a tactical defense against new legislation, particularly by large Internet companies, a new self-regulatory code is often met with skepticism. Given this history, the policy question raised by critics of the two new codes seems straightforward: Are they strong enough that we can safely forgo any new laws? My goal in this paper is to demonstrate that this question is not the one we should be asking. Selfregulation is in itself an important goal. While self-regulatory systems may help policymakers to understand complex new areas or take on some of the government’s burden of enforcing agreed standards of conduct, they cannot replace laws. Those who create them solely as a means for avoiding new legislation are likely to be disappointed. Likewise, those who criticize all self-regulation on the grounds that its main purpose is to allow a self-serving industry to avoid new legislation are missing the potential benefits of good selfregulation. If the creators of a self-regulatory system understand its valid purposes and design the system with a view to understanding its limits, then the system is worth having, regard-