Moral imperatives and slippery slopes: Seeking bioethical consensus

Print 22 May 2015
Jennifer Boggs / BioWorld

ATLANTA – Just because we can, should we? One of humanity's age-old questions took center stage at the two-day BEINGS 2015 meeting, during which delegates began laying the groundwork for what is hoped to become a consensus document setting ethical principles, policies and guidelines in the area of cellular biotechnology, which includes stem cell science and the rapidly advancing gene-editing technologies.

Billed as first of its kind, BEINGS – the acronym stands for Biotechnology and the Ethical Imagination: A Global Summit – coincidentally occurred on the heels of two headline-generating events in the space earlier this year: In February, the UK became the first country in the world to approve the use of mitochondria donation – the so-called three-parent embryo – to prevent inherited mitochondrial diseases, and the April 4, 2015, issue of Science published a paper, authored by a Who's Who list of researchers, including George Church, Paul Berg and Jennifer Doudna, discussing the implications of genomic modifications and urging caution when employing such technologies. (See BioWorld Today, Feb. 4, 2015.)

Both cases involve approaches that can affect the way human DNA is inherited. "When talking about technology as powerful as genetic technology, we have a moral imperative to ask the value questions," Paul Root Wolpe, director of the Center for Ethics at Emory University and founder of BEINGS 2015, said during his opening remarks.

The scientific world is at the point where it has "tools that are powerful enough to tempt us to use them," but knowledge is still limited, he added, with researchers "still more like mechanics than engineers or theoreticians" when it comes to human DNA.

Wolpe explained the basis of BEINGS 2015 to bring together all perspectives – even dissenting opinions – for the creation of the consensus document geared toward thoughtful policies and away from the extremes of either "biological utopianism [or] the perspective of fear and suspicion, both of which I think of as equally parochial," he said.

Delegates included representatives from industry, academia, government and religious organizations, and all attendees were encouraged to submit comments and questions to be discussed and incorporated into the final consensus document, the scope of which will focus on basic science and translational medicine – stopping short of clinical applications – and covering topics such as stem cells, synthetic biology and CRISPR-like tech.

The end goal will be finding ways to balance the use of those technologies that boast the potential for reducing disease and human suffering, while considering the potential for abuse and error and also addressing the concerns of a public conditioned by a pop culture filled with dystopian fiction – not to mention many a Hollywood blockbuster – that has instilled a common wariness for the unintended outcomes that can accompany scientific progress.

THE FEAR FACTOR

Many film and literary references made their way into discussions Monday, from "Gattaca," "Elysium" and "Never Let Me Go," to "Oryx and Crake," authored by Margaret Atwood, one of BEINGS' speakers, who described the book as a "fun-filled romp about the extinction of the human race," though she more seriously pointed out that all the technology described in the 2003 novel – gene modification and transgenic animals, for instance – existed at the time of its publication.

And it's difficult to talk about modifications to the human germlines without someone raising the risk of "designer babies," a fear that elicits strong reactions but might not actually fall within the scope of possibility, according to Steven Pinker, a Harvard professor whose CV includes experimental psychologist, cognitive scientist, linguist and science author.

In fact, he scoffed at the idea of gene-editing tech ever being used to allow wealthy people to build genetically enhanced children. "There is no gene that gives you 10 IQ points" or musical talent or athletic ability, he noted. "I don't think we can get there from here."

He urged delegates to be realistic when developing rules and suggested that ethics issues should be considered on a case-by-case basis.

During a comment period, one attendee pointed out that, to a certain extent, gene selection already existed in practice. Jeanne Loring, of The Scripps Research Institute, gave the example of in vitro fertilization, during which cells are tested for mutations. If any are found to carry mutations, those embryos are not used. "So these are techniques we've already accepted as being ethically viable," she said.

But it's not only human germlines that can be engineered.

In a presentation on "the bioterror side of things," New York University bioethicist Arthur Caplan recounted how medical journals Science and Nature had both been asked to redact certain portions of papers describing engineering of a more transmissible and more deadly version of the H5N1 flu virus, citing the risk of that information falling into the wrong hands.

While the fear of a pandemic is a legitimate one, not studying viruses seems an irresponsible option, since they have a tendency to mutate and change without any tinkering on the part of scientists. "The worst terrorist humankind faces is nature," Caplan said. "These viruses are mutating out there all the time."

During a separate discussion, Personal Genomes founder and Harvard genetics professor George Church made reference to the genetically modified mosquitoes being developed to prevent the spread of disease.

That research, too, has resulted in backlash. Earlier this year, residents of the Florida Keys objected to one such program that would involve the release of engineered mosquitoes to prevent dengue fever. (SeeBioWorld Today, March 23, 2015.)

Much of the fear surrounding science – of any kind – can be attributed to lack of clear communication with the public. That means finding a way of reaching out and establishing trust should be part of the overall goal.

"I think the public has to trust what you're doing," NYU's Caplan said. "Right now, I don't think we have that framework."

He offered the gene-editing technology as an example. "People are convinced that some scientist out there is going to apply CRISPR for eugenics purposes."

DIY SCIENCE

Worries also include the possibility of creating less intentional consequences. In talking with the public, Emory's Wolpe acknowledged, it is the potential for mistakes, or bioerrors, that has people worried. "This is where a lot of the anxiety lies."

And not just for the public. "Sometimes it takes just one error to wipe out gains of an entire field," he added.

One way of alleviating some anxiety, obviously, is to establish clear rules for oversight and responsibility in terms of governance. But policies and rules in place for research could help, too. Caplan suggested a few ideas, such as branding engineered organisms and building what is essentially a self-destruct mechanism in the engineered organism so that it does not survive well outside its intended environment.

Oversight will work for industry and organizations. A bigger threat, however, might be the fact that science is no longer limited to the lab.

Pieces of DNA can now be ordered by mail and built at home, noted Robert Friedman, vice president for policy at the J. Craig Venter Institute.

From a bioterror perspective, it means easier access to components that previously had to be stolen from a high-security facility. But there is another group to worry about as well: the do-it-yourselfers.

"We really are potentially entering a phase where technologies are becoming simple enough [that] there's a DIY element," Wolpe said. He wondered, "In 2020, we will have Biotech Valley," the biotech equivalent of Silicon Valley, starting in a single scientist's garage?

If so, it's another argument for establishing bioethics training as early as possible, to link science and ethics from the get-go, rather than trying to overlay an ethical argument after a scientific discovery or invention.

"I think bioethics belongs in high school," NYU's Caplan said. "I think we miss an educational opportunity there."

BY CHANCE OR BY CHOICE?

Of course, defining "bioethics" is a task unto itself, as is determining what is ethical and unethical in scientific development, a fact highlighted by discussion on germline engineering, a topic that easily generated the most back-and-forth among panelists, notably Harvard's Pinker and McGill University's Margaret Somerville.

The founding director of the Centre for Medicine, Ethics and Law at McGill, Somerville conceded in her remarks that she has a "controversial opinion that we need a concept of the sacred," suggesting that the human germline should be held "in trust for future generations," and should not be manipulated.

By her argument, both the UK's decision on three-person embryos and the potential of CRISPR are "unethical because they alter that germline."

Somerville acknowledged that the germline changes all the time – by chance, not by choice. "We have the right to come into existence through chance," what she later called the "genetic lottery." In drafting the bioethics guidelines, she said, BEINGS delegates will have to ask whether treating a disease is enough to warrant intervening in that genetic lottery.

Pinker adamantly disagreed. "I'm not sure what it means to pass on the germline to future generations," because mutations are constantly being introduced, he said. "Each of us is changing the genome, whether we like it or not, when we have children."

Earlier in the discussion, Pinker had emphasized what he called a "moral imperative" to use emerging technologies to treat disease. He cited a Global Burden of Disease study estimates one-third of life is cut short or compromised by disease. "It was always thought to be part of the human condition," he said. "But now we know that's not true," with massive improvements in life expectancy, across the globe, over the past 30 years, due at least in part to biomedical research.

One thing bioethics discussions should not do, he maintained, is "bog down research in red tape, moratoria or threats of prosecution." Pinker urged delegates not to "thwart research and practice" that have current or likely near-term benefits based on the speculation of harm. "The last thing Sisyphus needs is people helping to push the rock down the hill."

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