Interesting Challenges Ahead
By Rich McManus
Photos by Ernie Branson
On the Front Page...
As medicine gets more clever at manipulating genes to treat human ailments, society also verges closer to hard decisions about which interventions are aimed at correcting problems, and which interventions have the ethically more troubling aspect of enhancing some facet of the human organism.
Such capability sounds like science fiction, but the questions are already arising in philosophy and bioethics departments the world over; on Jan. 31, former NIH ethicist Dr. Eric Juengst offered an overview of current academic thinking in a talk at Lipsett Amphitheater on the topic, "Anticipating Genetic Enhancement: Professional, Ethical and Public Policy Issues." It was the first lecture in an NHGRI-sponsored series titled, "The Human in Genome."
Until the advent of recombinant DNA research in the early 1970s, no one had to worry much about the possibility of medically reengineering human beings to emphasize this or that desirable trait, said Juengst, who was the first chief of the Ethical, Legal and Social Implications Branch of what was initially the National Center for Human Genome Research; he left in 1994 and is now at the Center for Biomedical Ethics at Case Western Reserve University.
"Peoples' imaginations leaped at what we might do with genes and splicing," once news of the technique spread, he said. "The question arose, 'Might we improve on the species' design?'"
A science fiction book published in 1978 forecast men modified to live underwater, humanoids who could inhabit space sans spacesuits, and a class of warriors bred only for battle. But before any such figments became thinkable, there was an easy consensus about the limits of modifying our own kind, said Juengst: "Whatever we do, we shouldn't redesign the species." This stricture relied on two fundamental principles no one is wise enough to imagine what is ideal in the first place, and the lessons of eugenics movements of the past provide ghastly evidence of the danger of such an effort.
While people felt, almost instinctively, that science should not cross the line between improvement (to thwart a disease or disability) and enhancement (to confer some kind of advantage), there was prior to the establishment of the recombinant DNA advisory committee at NIH (the RAC) no rule-making body to consider an ethical path society might take in the shadow of the new science. The RAC helped make two ideas explicit: we ought not to infect the germline with recombinant DNA molecules, and we shouldn't go beyond therapy into the realm of enhancement.
But as medical therapies became more sophisticated, blurring the line between addressing a given ailment and imparting novel, and beneficial, qualities to humans (for example, revving up the immune system to fight cancer), ethicists had new and deeper questions to ask. "We had to remind ourselves, 'What was it about enhancement that we didn't like?'" said Juengst.
An unusually plainspoken philosopher, Juengst used common parlance to categorize these objections:
Having led the audience into these deep waters, Juengst offered options society might choose, including careful assessment of the risk associated with therapies that might potentially confer enhancement, and evaluation of access to such enhancement, should it become possible. To get started, it helps to consider what is normal function and what is disease.
On the "normal" side of the ledger, "We know what's normal in a statistical sense, and there are treatments that can return you to the normal range if you've fallen out of it that's medicine," Juengst explained. "Enhancements are interventions that would lift you out of the normal range. But are we going to recognize enhancement when we see it? The problem is where to draw the line in the normal range. Do you do it at (renowned physicist) Stephen Hawking-level intelligence?" What about cancer patients who get an improved ability to seek out and destroy cancer cells? Or new therapies for reducing high cholesterol that saturate the body with LDL receptors, turning people into super cholesterol-soppers? These therapies confer abilities that are "abnormal," but they are also helpful.
Juengst posited a "preventive model" whereby as long as a therapy helps people avoid disease, it therefore fits into the standard healthcare paradigm. "But the development of a superhuman ability to resist disease is likely to shift the 'enhancement line.' Still, it seems legitimate because it helps avoid suffering." By the year 2020, we are likely to find ourselves asking, "If we can treat the individual, why not their successors (via germline therapy)?"
If you look not at what constitutes normality, but at disease states, you can also find ethical direction, Juengst continued. Consider the case of progeria, or drastically sped-up aging. "If we could slow aging in a patient with this disease, that would be great. But what are the limits of aging? When is it appropriate to oppose the process?"
Lest people think that such questions only preoccupy dreamers, he pointed out that the American Academy of Anti-Aging Medicine has some 10,000 members devoted to extending the range of a healthy lifespan, and that the company Geron is avowedly interested in slowing cellular aging. Will there be a temptation to apply what, for progeria, might be therapy, to an "off-label" use to simply extend a life already replete with advantage?
That led to a discussion of how to regulate use and development of new technologies that was as rich in example and potential danger as the foregoing discussion. Terms such as "genetic Maoism" (deliberately hampering the genetically endowed so as to achieve classlessness) and "trickle-down genetics" (wherein enhancements would be bundled with the obligation to work for the benefit of the unenhanced) hint at the difficulties Juengst foresees for the coming half-century.
Teasing out where the "enhancement" line lies in genetic medicine "is going to be more complicated than we thought it was going to be," he concluded. He anticipates an eventual congeries of policy approaches, some NIH-based, others at the level of professional caregivers. "But I suspect that the issues of tolerance and diversity will only be more important as time goes on."
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