drug abuse
tewtetw Foundations of the eHealth Code of Ethics by Bette-Jane Crigger, The Hastings Center Note: This paper originally was presented at the 2001 Quality Healthcare Information on the Net Conference, November, 2001. The Internet offers real potential to improve well-being by offering unprecedented access to health information, products, and services. At the same time, it also makes possible forms of communication and kinds of practice that raise ethical, social, and legal concerns. We are only beginning to develop a clear, shared understanding of how to participate in the virtual environment of the health Internet. And only beginning to think carefully about what opportunities we can take advantage of and what opportunities may be technically possible but are ones that we should not pursue in the new world of ehealth. Trust is a fundamental concern in ehealth. Indeed, it is fundamental to health care. To receive the care they need, patients must share private information and be willing to take medications, use medical devices, or often accept interventions that intrude on their bodies. They rely on health care providers to keep their personal information confidential, to provide accurate and appropriate information about their conditions and possible treatments, and to recommend the therapy they believe to be in the patient's interest. But trust can be particularly difficult to sustain in the anonymous, virtual environment of the Internet and World Wide Web. Anyone, anywhere, who has access to a computer, a link to the Internet, and modest technical skill is able to set up a web page offering health information, products, or services, regardless of his or her qualifications. And anyone, anywhere is able to present him- or herself as a patient-whether to a health care professional or to an online patient community-whatever his or her actual health status. Moreover, unlike traditional health care, the Internet is not restricted by geographical or political boundaries, making it possible for users to seek, and others to offer, health information, products, and services across international or local borders-where different languages may be spoken, and different laws govern how medical professionals are licensed, how health products or services may be advertised and sold, how personal information is handled. Determining which existing national or local laws apply to online practices and what new regulation may be needed is the subject of ongoing debate and deliberation. Importantly, with the technology currently available, health care professionals cannot examine a patient who seeks personal advice or services over the Internet. Instead, caregivers must rely on what an "e-patient" tells them -- about symptoms or health habits or concerns -- and thus work without much of the rich information that a physical exam and face-to-face conversation would provide. While the technology will surely evolve, today, health care professionals must find ways to compensate for this lack of information if they are to offer advice that is both medically and ethically sound. The eHealth Code of Ethics The eHealth Code of Ethics is an important part of the effort to make it possible for the Internet to realize its potential to enhance people's health status and well-being worldwide. The goal of the code is to help create a trustworthy environment for all users, whether they are patients, health care professionals, website sponsors, people who develop health applications and content for the Web, or individuals who turn to the Internet to help them stay well. First and foremost, taken together the principles of the eHealth Code identify the fundamental values at stake in creating conditions for trust in the health Internet: candor and honesty; quality of information, products, and services; respect for individuals' right to give informed consent; and respect for privacy and protection of confidential information. The principles identify as well the essential features of good professional and business practices that instantiate those values. These values are not new, or unique to the health Internet, of course -- they are just as fundamental when health care is provided face to face. The eHealth Code extends the ethical guidance that frames health care offline to meet the special challenges raised by the technical possibilities of the online world, in which information flows much more rapidly, to potentially many more people than has ever been possible before. In which computers enable us to compile and manipulate vast amounts of personal health data more readily than ever, and in which a whole new set of players can take a central role in health care, including not only health care professionals and institutions, but information technology specialists and new kinds of entities like health Web portals as well. Ethical Foundations of the eHealth Code The philosophical foundation of the eHealth Code is the principle of respect for persons; that is, the ethical obligation to treat each individual as having dignity and moral worth him- or herself, and never simply as a means to someone else's purposes. The principle of respect requires that we treat individuals as independent decision makers and allow them to make choices -- about what products to buy, what services to use, what is most important in living a good life -- based on their own values. Obviously, that doesn't mean that anything goes, that we should or do permit individuals to make just any choices or act in just any ways. We do not condone murder, or permit people to voluntarily sell themselves into slavery; we condemn torture, exploitation, and a host of other activities. But the principle of respect for persons does mean that we have a strong ethical duty to acknowledge individual dignity and allow individuals to make well thought through decisions about how they live their lives. The principles of the eHealth Code of Ethics pick out different aspects of what the principle of respect for persons means for the health Internet. At the same time, they set out the conditions for trust in this new health care environment. As the philosopher Annette Baier has noted, trust is like the air we breathe -- we take it for granted and only notice it when it is polluted or violated. Most of the time, we assume that we can trust people or institutions, and do so until we learn something that causes us to question whether we should. As Baier further notes, "reasonable trust" requires "good grounds for ... confidence in another's good will, or at least the absence of good grounds for expecting another's ill will or indifference." The eHealth Code specifies in the broadest sense what count as "good grounds" for confidence. Candor & Honesty To treat someone with respect, and as an autonomous decision maker, requires that we be forthcoming and truthful with him or her. We must present ourselves fairly, neither withholding information a reasonable individual would want to know in dealing with us nor presenting information in ways that lead him or her to form mistaken impressions about us. That is, the principle of respect requires that we be both candid and honest. We rest our trust on assumptions we make about how individuals and organizations behave, relying on what we think we know about them. Sometimes we learn about them from others who have dealt with them, but often we know only what the people or institutions themselves have told us about who they are and what they do.