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National Bioethics Agenda Should Include Artificial Life, Virtual Worlds, and More
Mark S. Frankel
Artificial organisms, the meld between mind and machine, and the ethics of doing research in online communities such as Second Life should be part of the agenda for the successor body to the U.S. President's Council on Bioethics, according to AAAS expert Mark S. Frankel.
At the invitation of the current Council, Frankel identified four emerging topics in bioethics that should be considered by future commissions: personalized medicine, synthetic biology, virtual communities, and neuroscience. The science in these fields is advancing rapidly, said the director of the AAAS Scientific Freedom, Responsibility and Law Program, but their ethical implications have been mostly neglected at a national level.
The AAAS program, which monitors ethical, legal, and social issues related to science and technology, has included a strong bioethics program since 1988, producing comprehensive reports on human genetic modifications, neuroscience and the law, human cloning, and stem cell research. Frankel's own research includes efforts to promote research integrity, the study of the impact of information technology on human subjects, and the legal implications of genetic and neuroscience advances.
Frankel delivered his remarks at the Council's 12-13 March meeting, which brought university scholars and the leaders of international bioethics commissions to Washington, D.C., to discuss the Council's future. Established by executive order in 2001, the Council's current charter expires in September.
Although President Barack Obama is expected to renew the Council in some form, "it's anyone guess" how a national bioethics commission might look under the new administration, said Summer Johnson, executive managing editor at The American Journal of Bioethics, in her blog for the journal.
Among Frankel's recommendations:
As scientists learn more about variation in the human genome and its links to disease, the future of medicine may include narrowly-designed therapies that target small groups of individuals bearing certain genetic markers. AAAS's own project on the topic suggests that the era of personalized medicine could yield impressive treatments, said Frankel, but it also highlights concerns about the privacy of individual medical records used to develop these new therapies.
Clinical trials for personalized treatments can pose another ethical dilemma. "The very fact that you are recruited for such a clinical study may well create feelings of stigma [and] perhaps lead to discrimination in some fashion," said Frankel.
Are researchers on the brink of building a new life form? Efforts by the J. Craig Venter Institute and other laboratories are moving science closer to designing biological systems that do not exist in the natural world. The goal of such research would be to create products such as bio-computers, new vaccines, and energy-producing microbes. The impacts of synthetic organisms on environmental and human health and safety are largely unknown.
"While a lot is being said about the physical risks of synthetic biology, whether by accident or deliberate malevolence, not much is being directed toward the more metaphysical issues," Frankel told the Council. "We should talk about what it would mean to 'create' life forms in the lab, and what humanity's responsibilities would be in such instances."
Even as synthetic life may "blur the boundary between living organisms and machines," Frankel notes that breakthrough studies allowing the brain to communicate directly with a computer are stepping up to the same boundary. For the moment, these experiments are used to restore function to people with limb disabilities and disorders such as Parkinson's disease, but could they someday be applied to change memories or behaviors?
Frankel noted that new research identifying specific regions of the brain related to moral judgment "raises the intriguing question of the relative influences of brain circuitry, culture, and the environment on ethical decision-making."
In his discussion of online, simulated communities, Frankel cited a National Institutes of Health announcement seeking grants to study ways to reach out to diabetic patients in virtual communities such as Second Life. The explosive growth of virtual communities might entice those looking for new research venues, but their avatar residents present novel challenges, he warned.
"The question of what are the ethical standards that should govern the exposure of patients and/or research subjects to virtual worlds is not, as far as I can tell, on anyone's radar screen," said Frankel. He noted that obtaining informed consent from "real-life" people could be a problem among virtual community dwellers, who prize their anonymous, ever-shifting identities in the new worlds.
Any future bioethics commission should find some mechanism for getting public input on the topics they choose to address, Frankel said. He suggested that the group "get out of Washington periodically" and re-design its makeup so that at least 25% of its members represent public groups.
"Having a single token member of the public, which the President' Council on Bioethics didn't even have, is simply not a meaningful effort," said Frankel.
30 March 2009