The Beginnings of Information Ethics: Reflections on Memory and Meaning

These days in my encore career as a hospice chaplain, I have the satisfaction of using my knowledge of information ethics in amazing new ways. As one of the pioneers in our field, I look back on the issues we tackled prior to becoming main stream and I am grateful to be able to continue my involvement in critical issues surrounding death and dying as professional, pastor, and a participant observer. In the world of health care and hospice, the stakes are high and decisions about life and death require careful use of information and information technologies. I often think of the model I presented in 1992 to detail the scope of information ethics and am pleased at how well it covers the significant issues I think about in my work today providing support for families before and after loss. My work is personal as well as professional with real people, death, grief, change, and hope. Information use and education is a huge part of what hospice provides patients and families in making the best choices in tough situations.The Scope of Information Ethics: The BeginningsWhen I began to think about information ethics in the late eighties, the closest field for comparison was computer ethics. The scope I had in mind was larger and included not only what was then called "information" but also the world of knowledge including the philosophy of knowledge. While exploring the philosophy of knowledge, I found the fields of philosophy of technology and the philosophy of science. Needing to attempt something, I started with five working categories to try on others. They were: Access, Ownership, Privacy, Security, and Community. They fit nicely in a star shape and provided a visual image to stimulate discussion.The five can be placed on the star in a variety of places and various comparisons can be made among them. Each one of the five highlights a key element uniting a wide variety of issues, problems, and dilemmas in the years since I first described it as a place to begin for the scope of information ethics and continues to be useful in my hospice work.Information is so very powerful in matters of patient care, family/caregiver education, government regulations, and public policy. Balancing patient autonomy and family responsibilities is not simple. Choosing hospice or palliative care rather than active treatment is a decision more gray than black or white. New drugs and treatments become available, as technologies and laws change quickly. Valuing both patient autonomy and family or physician decisionmaking get complicated by the need to prepare advanced directives and then to maintain informed consent at every step as the patient declines. My involvement now is close to the people who need good information and help using it under pressure. Having a very different angle from which to view information ethics issues and how much they matter to people in their last months is extremely rewarding. In this brief reflection, I hope to offer some insights from the early years of information ethics and share a few ideas for future study and reflection.Background and BiasIn the years of my active involvement in higher education and particularly in professional education of clergy and librarians, I have been fortunate to be a woman in two professional groups that have undergone major changes. Certainly, since I completed college in 1967 and seminary in 1970, large numbers of women have entered the ordained clergy. At Duke, I was the only woman to graduate with my entering class in the Master of Divinity program. A few others graduated later but not many but the numbers went up quickly. Today women who were in seminary in those years are retiring from long pastorates and terms as bishops. Also in the Roman Catholic Church, the roles of women have changed. For example, Roman Catholic lay women now are numerously in professional hospital chaplaincy and related careers such as hospice or prison chaplains. A search of the published literature and presenters at conferences show the significant impact that women have had in religious studies and in faithrelated professions. …