Future Doc | January 2, 2006 Issue - Vol. 84 Issue 1 | Chemical & Engineering News
Volume 84 Issue 1 | p. 15 | Insights
Issue Date: January 2, 2006

Future Doc

Big questions and ethical conundrums abound at the dawn of 'personalized medicine'
Department: Business
Credit: Quintiles Transnational Photo
Credit: Quintiles Transnational Photo

At the December meeting of the Société de Chimie Industrielle, American Section, Gerald J. Fitzgerald, a professor in the department of history and sociology of science at the University of Pennsylvania, delivered a talk on technologies developed during World War II to combat biological warfare. Fitzgerald touched on advances of the period such as machines that suck germs out of hospital rooms and supersterile enclosures in which to seclude newborns deep within those hospitals.

On one level, the presentation served to illustrate the absurd lengths to which humankind has gone over the past 150 years to isolate itself from its environment. On a more practical level, however, Fitzgerald described contraptions that have evolved into vital mechanisms for dealing with babies and biological warfare.

New things are in the works in hospitals as pharmaceutical research converges with information technology (IT) in a flat-out war on cancer and other diseases. This is taking place as the 21st century shapes up as the age of "personalized medicine," a rather grand scheme that promises a day in which each of us will carry a digitized compendium of our genetic predilections toward disease.

Enthusiasts predict that in the near future we will know at a very young age if we are going to have Alzheimer's or any other disease that can be detected genetically. We will be treated with targeted, preventive medicines.

Skeptics ask whether we want to know at the age of 20 that we are likely to have Alzheimer's disease.

This is only one of the questions that face us in a world of medicine that, like the air suckers and infant terrariums of the 20th century, might be viewed as an intrusive system of shields and preventive measures. Another question: Will this information on our genetic makeup be put to other, more sinister uses by, say, employers? Or the government?

The Orwellian perspective is only heightened by the current push to collect and catalog biological specimens.

Speaking at a conference in Washington, D.C., in November, Anna D. Barker, deputy director of advanced technologies and strategic partnerships at the National Cancer Institute (NCI) described how NCI, part of the National Institutes of Health, is leading efforts to discover high-quality biospecimens and to develop IT architecture to manage and share the data from so-called biobanks (C&EN, Dec. 12, 2005, page 20). She admits being frustrated by the current pace of things. "I don't have the impatient gene," she said. "I have the impatient chromosome."

Among the things slowing the process are big questions and ethical conundrums. Along with NIH, ethicists such as Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, and patient advocates such as consultant Paula Kim, both of whom spoke in Washington, are wrestling with the following: establishing a secure, global biobanking infrastructure based on informed consent of donors; keeping research focused on the attainment of knowledge rather than the attainment of patents on genes; and aiding the public in swimming through a sea of probabilistic information about personal health.

IBM, which hosted the conference, announced a new corporate policy that it will not discriminate in hiring and promotion of employees based on genetic data-a move applauded by Caplan, Barker, and Kim.

Finally, there is also the question of whether personalized medicine will make medicine more impersonal.

The New York Times Magazine ran a cover story on Nov. 6 about D. Holmes Morton, who runs a pediatric clinic serving Amish and Mennonite families in Lancaster, Pa. The article, titled "A Doctor for the Future," played up to good effect the incongruity of the plain farm families coming to a doctor with high-tech equipment like an Affymetrix GeneChip Mapping 10K microarray scanner at his disposal.

Behind the scenes, Morton maps the genetic course of cortical dysplasia and "pretzel" syndrome. Up front, however, he's a "country doctor," intimate with the families whose children he treats so as to better understand their personal needs. To unwind, lately, he is mastering Bach's Suite 5 in C Minor for cello, according to the Times. He's a Renaissance man with high-tech tools.

Stephen M. Prescott, chief executive officer of LineaGen Research, a spin-off from the University of Utah that brokers the Utah Population Database to researchers, says he likes the idea of personalized medicine's compatibility with Norman Rockwell's small-town doctor. With IT taking care of the analytics, physicians should have more time to concentrate on guiding patients in their choices, he says.

"That's the part of physician care that patients value most," Prescott says; "the right-side-of-the-brain element of the relationship."

Lastly, will science give us too much information and distract us from living happy lives? It's possible, but that would involve overriding the human spirit's charming ability to keep science in perspective-note how few people are altering their lives because of the threat of bird flu or, for that matter, global warming.

It is heartening, in fact, to see science leadership—NIH in particular—recognizing ethical and societal concerns as it tries to channel our bounty of new genetic data toward progress in the search for cures.

Views expressed on this page are those of the author and not necessarily those of ACS.

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