Ethical Issues in Biocomputing
Peter Hjelmström
What is Biocomputing?
Which are the ethical issues in biocomputing? To answer this question we first need to define what biocomputing is. Biocomputing could be defined as the construction and use of computers which function like living organisms or contain biological components, so-called biocomputers (Kaminuma, 1991). Biocomputing could, however, also be defined as the use of computers in biological research and it is this definition which I am going to use in this essay. With this interpretation of biocomputing the complicated ethical questions connected with concepts like artificial life and intelligence are not dealt with.Ethics in biocomputing is the systematic study of human moral conduct in use of computers in the life sciences. This essay is going to address issues in the intersection between biology, computing and ethics in the framework of a society. Computers are primarily used in biology for either storage of information or construction of models of reality (e.g. of drugs and their binding site), and it is especially the former aspect which is interesting from an ethical perspective. The use of models of reality in research is, however, interesting from a scientific theoretical point of view and for instance the making of predictions concerning real life from computer models could indeed have ethical consequences. Nevertheless, in this essay I am going to discuss two main ethical problems. The first problem is whether the information stored in biological databases could be used for discrimination of individuals or groups and the second problem is how the databases should be maintained.
Is there a Need for a New Ethics?
The use of international, publicly accessible electronic databases containing genetic information is a relatively new feature (Saracevic, 1993) (Boguski, 1994) (Waldrop, 1995) and the ethical consequences of this new field of science are still largely uncharted (Goodman, 1996). Before turning the attention to biocomputing, I will mention the recent discussion about whether we need new ideas or approaches in ethics to deal with new biotechnology in general.There have been proposals that the problems for humanity and the world posed by the new genetic technology are novel and that consequently a new kind of ethics, genethics, is needed (Suzuki, 1989). The idea is that genes in some way are more sacred than other parts of the organism, since they indeed are the foundation of life, and that there is a risk of "Playing God" when using the new technology. Others have argued against this and claimed that the use of genetic technology does not pose any new ethical problems and that, to the contrary, insight and understanding of genetic technology rather support us in our stewardship of the earth (Macer, 1990). I personally believe that it is not wrong to invent and use new technology, but that it is wrong to abuse it and to have the wrong attitudes to the power attached to it. There is, however, often distrust among the public in scientists' ethical conduct when using new biotechnology. Much of this distrust is caused by a fear of the unknown and a fascination of the science fiction image of the presumptuous scientist creating new life forms in an isolated laboratory. This "Jurassic Park scenario" or "Frankenstein Factor" (Gaylin, 1977) could best be reduced by education. I would argue that it is the scientists' responsibility to inform the public about what they are doing, since most science is indeed publicly funded.
Genetic Discrimination and Biocomputing
There are reasons other than the "Frankenstein Factor" for the public to be skeptical about scientists' use of genetic technology. Genetics has until quite recently rather often been used for discrimination and stigmatization of individuals and groups (Markel, 1992). There have been intense discussions about insurance companies' and employers' use of genetic information and how it would be possible to avoid genetic discrimination by legislation. Most of these discussions have focused on discrimination against individuals and their relatives after presymptomatic genetic screening. If a computer database contains genetic information concerning certain individuals it is an absolute requirement that the database is well encrypted. There is legislation in many countries regulating this, but this legislation is not always followed in medical research and practice due to for instance carelessness and, rather surprisingly, technical limitations of the software used (Fjell & Hjelmström, unpublished data). Since the public genomic databases do not contain information about individuals the same ethical problems are not raised by them. Most genetic databases contain genetic information from many unknown donors, which could be seen as the genetic equivalents of unknown soldiers.The genetic variation in humans is less than one percent of the total genome and it occurs mostly among members of the same race, rather than among races. Nevertheless, there have been fears that genetic databases containing information of the variation among races and other groups could be used for discrimination (Lock, 1994) (Chee, 1995) (Beardsley, 1996) (Goodman, 1996). Another, and even more terrifying scenario would be the construction of biological weapons specifically designed only to affect members of a population with a certain genetic makeup. In a remarkable article regarding ethics in biocomputing, Goodman claims that when scientific research has social consequences for population groups, members of this affected group should be included in the decision making that surrounds the research (Goodman, 1996). It is, however, the geneticists themselves who are most reluctant to perform genetic tests (Clarke, 1994), probably since they better know the potential to misuse them. Some researchers even claim that "it is not currently possible to take DNA on a population basis and store it for future tests in an ethical manner", since the people donating their DNA cannot possibly give informed consent on future use of their DNA (Baird, 1995). It does not matter whether the DNA stored is from a certain group or not. The interesting question for most biocomputists is, however, not whether information about genetic diversity among populations and groups should be stored in freezers, but if the information should be publicly accessible in computer databases. This is an issue which needs to be further discussed.
Maintenance of Biological Databases
Another ethical issue is who should maintain the biological databases. In computer networks enormous quantities of information can be stored, retrieved and transmitted. International, publicly accessible computer databases with biological information are very powerful tools used by almost all researchers in the life sciences. The tools must be reasonably accurate, accessible, stable and complete to be useful and relied upon (Goodman, 1996). Goodman suggests that, as these tools are often both compiled and used by scientists, there are ethical obligations for all scientists to contribute to the databases if they have something to contribute. Also commercial companies using the information in the databases should, in my opinion, contribute to the growth of the databases in the same way as academic scientists do. In addition, what is contributed should, all things being equal, be as complete and accurate as possible. "It is morally perverse to expect others to contribute to a community resource - and to use that resource - without also contributing", according to Goodman.Reasons not to contribute to common scientific databases could, besides laziness, be general uncertainty about computer technology, lack of the rewards associated with peer-reviewed publication and commercial interests to maintain control over property. The desire to maintain control over intellectual property is perhaps the most interesting reason and the ownership of information contributed to a global database could sometimes be unclear. Nevertheless, there should be no difference between publishing results in a scientific journal and submitting data to a scientific database. Once the information is contributed it is important that it is as widely accessible as possible and that the information is accurate and reliable. There exist many databases containing identical or similar information and it is a question of priorities if this redundancy is necessary to maintain good accessibility, or if the resources could be used better for non-redundant information. This ethical question, like others regarding biocomputing, could best be discussed globally.
Why discuss ethical issues in biocomputing?
The flow of information world-wide in biocomputing demands global discussions. Computer technology has simplified research and educational collaborations all over the world. Moreover, biocomputing is an interdisciplinary science and it has forced researchers from different fields to make things understandable to each other. When discussing ethics in biocomputing it is, however, particularly important to involve not only scientists from other fields, but also the public. It is the scientists' ethical responsibility to explain the features, possibilities and risks associated with biocomputing for the society which is funding it and for which it is meant to gain. I have in this essay tried to address two important ethical issues in biocomputing, but there are indeed more issues to discuss and certainly even more issues to come. It is important that the discussion is not left behind, but rather anticipates the rapid and exciting technological advances.Links to some Internet resources on ethics and biocomputing.
The author would like to thank David Croke, Fredrik Dettner, Jenny Fjell, Georg Fuellen, Jesper Sjöström and Paul D. Swartz for valuable comments on the essay.
Peter Hjelmström
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