Martha M. Smith
International Center for Information Ethics
& The Palmer School of Library and Information Science
Long Island University
Bioinfoethics: A field of applied ethics concerned with biomedical, living systems in relation to the information systems that enable or restrict the transfer (creation, organization, dissemination, evaluation, and use) of data, information, and knowledge between those living systems and individuals or institutions in the global society.
Scientific American recently called the field of bioinformatics the new gold rush because genetics without bioinformatics has no future. (Scientific American, 7/2000) If so, then in the coming years, bioinfoethics may not be far behind. The ethical questions are already in the news.
- Who should own the Human Genome or have access to data about it?
- Does the promise of new drug therapies justify exclusive proprietary access to genetic information?
- Should genetic testing be required for jobs or parenthood?
- Shall we as a society constrain cloning and cloning research or is cloning an appropriate reproductive technology?
- Do the claims of public safety trump concerns for personal privacy in mandating DNA databanks?
- Is iris identification or body scanning a necessary security technology–in sensitive workplaces, in public spaces?
- Should brain fingerprinting be used to prosecute the guilty and exonerate the innocent?
Looking back almost fifty years from the perspective of 2000, after Dolly the sheep and the rapid conquest of the human genome, one could argue that Joseph Fletcher in 1954, signaled the beginnings of bioinfoethics with his book, Morals and medicine: The moral problems of: The patient’s right to know the truth, contraception, artificial insemination, sterilization, euthanasia. Fletcher asserted that the patient has the right to know the truth about a terminal illness or about reproductive choices. Despite its lack of constitutional status, the right to know has been more and more morally compelling in the last few decades. With the power to have relevant information and use that information in making decisions, the patient/consumer shares a responsibility that was once held exclusively by the physician. The right to know has entered into public policy with provisions for informed consent and advanced directives. Beyond medicine, the public’s right to know is often affirmed. For example, the environmental movement, typified in the annual celebration of Earth Day, grew from public concern with threats to clear air, water, soil and access to research data, sometimes from whistle-blowers, to build a case for change in government and industry practices. The Internet has fostered the notion that everyone has the right to know everything all the time and even to have free music and other copyrighted materials. While 24/7 access to all of the world’s knowledge is not very realistic, still the expectation of instant information gratification has never been higher.
Many of the issues in medical ethics and environmental ethics that were once controversial now seem almost tame compared to the clashes of values in genetics and bioinformatics. And the stakes are high as matters of profit, life, insurance, and death collide. The field of applied ethics (medical ethics, environmental ethics, information and computer ethics, mass media ethics, cyberethics, and business ethics) has a rich literature and a distinguished history of analysis and insight to use in engaging these new challenges.
When biology and medicine meet informatics (information systems management, statistics, computer science) and they meet on the Internet, then new complexities require renewed reflection. The curriculum proposed will use the concepts of Identity, Knowledge, and Community to analyze current issues in light of philosophical and ethical traditions. The needs of undergraduate, professional, and graduate students, both technical and non-technical, will be addressed. A classroom-based, web-based, or combination of setting will be considered as well as the wealth of print, electronic, and multi-media resources available to enrich teaching and learning. Below is a sampling of books, papers, and web sites that would be useful in preparation.
Bynum, Terrell W. and Rogerson, Simon. (Eds.) (1996). Global information ethics: Selected Papers from ETHICOMP95. Science and Engineering Ethics (UK). 1996 2:129-256.
Capurro, Rafael. 1996. Information technology and technologies of the self, Journal of Information Ethics 5(2):19-28.
Fletcher, Joseph. (1988). The ethics of genetic control: Ending reproductive roulette. Buffalo, NY: Prometheus Books.
Floridi, Lucas. (1999): Information ethics: On the philosophical foundation of computer ethics. http://www.wolfson.ox.ac.uk/~floridi/ie.htm.
International Center for Information Ethics. http://www.infoethics.net
Johnson, Deborah G. (1994). Computer ethics. (2nd ed.). Englewood Cliffs, NJ: Prentice-Hall.
Jonas, Hans. (1966). The phenomenon of life: Toward a philosophical biology. Chicago: University of Chicago Press.
Jonas, Hans. (1984). The imperative of responsibility: In search of an ethics for a technological age. Chicago: University of Chicago Press.
Mason, Richard, Mason, Florence, and Culnan, Mary. (1995). The ethics of information management. Thousand Oaks, CA: Sage.
Mitcham, Carl. (1995). Computers, information and ethics: A review of issues and literature. Science and Engineering Ethics, 1 (2):113-132.
Nash, R. F. (1989). The rights of nature: A history of environmental ethics. Madison: University of Wisconsin Press.
Smith, Martha M. (1997). Information ethics. Annual Review of Information Science and Technology (ARIST), Vol. 32, 1997 (pp. 339-366). Medford, NJ: Information Today for the American Society for Information Science (ASIS).
Finally, some possible directions for the research agenda of bioinfoethics will be suggested including consideration of global ethical traditions and the role of international non-governmental organizations (NGO’s) such as UNESCO (United Nations Economic, Social, and Cultural Organization) and documents such as the Universal Declaration of Genetic Rights (http://www.unesco.org ).
Smith, Martha M. (1997). “Information Ethics.” Annual Review of Information Science and Technology (ARIST), Vol. 32, 1997 (pp. 339-366). Medford, NJ: Information Today for the American Society for Information Science (ASIS).
UNESCO. http://www.unesco.org/webworld/infoethics_2/eng/proceedings.htm -: Observatory on the Information Society http://www.unesco.org/webworld/observatory/index.shtml – (1999-2000): World Communication and Information Report 1999-2000 http://www.unesco.org/webworld/wcir/en/
UNESCO. Observatory on the Information Society. URL: http://www.unesco.org/webworld/observatory/../index.html.
UNESCO. Webworld Infoethics. URL: http://www.unesco.org/webworld/infoethics/infoethics.htm.
United Nations General Assembly. (1948). Universal Declaration of Human Rights.