Diving Into The Ethics Of The Technology Behind Designer Babies

Scientists weigh in on new advancements in manipulating human genes.

Aldous Huxley’s Brave New World tells the story of a government that manipulates people’s genes to deepen the divides between social classes, creating a race of superhumans and a race of slaves. Today, a revolutionary technology called CRISPR-Cas9 has some scientists worrying that Huxley’s bleak vision isn’t so implausible, at least when it comes to having the necessary technology. CRISPR allows scientists to quickly and cheaply edit, delete or replace any gene in any plant or animal. Researchers have already used the method on an astonishing range of experiments, from engineering mosquitos to resist the parasite that causes malaria, to creating miniature pigs and stopping cancer cells from multiplying. In April, scientists in China announced they’d used CRISPR to edit the genes of human embryos. Naturally, fears about designer babies and eugenics were not far behind.

This week, hundreds of scientists convened in Washington, D.C., for a conference to talk about the ethics of editing the human genome, and to try to shape an international consensus on how the technology should and shouldn’t be used. Here, a selection of bioethicists share their thoughts on how we should move into the brave new world of CRISPR.

Dr. Paul Root Wolpe, professor of bioethics and Director of the Center for Ethics at Emory University: Before addressing ethical issues about human genetic modification with tools like CRISPR, we have to correct misunderstandings about what we can and cannot do. At this point in our understanding of the dynamics of human development, we can send in one or a small number of genes to correct or modify single traits. However, our understanding of the genetics of complex traits like intelligence, or musical ability, or athleticism is still rudimentary, and no one would know how to create a more intelligent child, for example.

Right now, the use that is being contemplated is to correct disease mutations and prevent birth defects, not to create designer babies. That being said, the potential is there for the future, and it brings up serious concerns about safety, about the rights and limits of parents to modify offspring, about what the goals are of technological advance and where and when we need to set firm boundaries to prevent harm and mistakes.

Henry Greely, professor of genetics and director of the Center for Law and the Biosciences at Stanford University: I see no real issues unless or until the cells are used to make babies or to treat people -- basic research without putting things in people doesn’t raise any concerns for me in this context.

For making babies, the biggest issue to me is the safety of the baby. I think much more research would have to be done on those issues -- probably at least a decade’s worth -- before anyone could responsibly try to make babies this way -- and only if the safety research had gone very well.

Beyond that, the issues of justice and access are important, but no more important with other issues, like access to good medical care.

I am not concerned about the issues of consent by the child (none of us gave consent to be conceived and born) or changing “the human germline genome,” which is an abstraction, not a sacred object. [Ed note: Editing the human germline is a controversial technique that involves actively changing the genes that are passed on to future generations and is currently banned in more than 40 countries.]

Lori P. Knowles, adjunct assistant professor at the University of Alberta's School of Public Health: Concerns about designing humans have been around for almost a century and yet the best way to design your child is still to choose your mate carefully. That is not to say that we cannot alter the future of human genetics -- we can, and we will be able to make more changes as our knowledge increases. Knowing that, we need to tread carefully, slowly and keep our values out front to guide us.

Eric M. Meslin, professor of bioethics and director of the Indiana University Center for Bioethics: It’s far better to have a governance mechanism that sets standards for what should and should not be undertaken by science, than to permit a Wild West scenario. Science prefers to know the lines they should not cross; so, too, does industry, government and society.

The best regulations would cover CRISPR science regardless of whether it was funded by federal sources or not. Unfortunately, this is hard in the U.S., where funding source is a criterion for regulation. I’d also like to see regulations that were flexible enough to permit the science to proceed with clear oversight by ethics review committees that were skilled and expert in this science.

Greely: For making babies, I think Food and Drug Administration-type review is essential. Some regulation beyond that, if it ever got past that safety and effectiveness stage, might be appropriate to limit off-label uses.

For nonhuman uses, we need more comprehensive and stronger regulation to make sure that environmental release of genome edited organisms only happens after careful review. That will also require other ancillary regulations, such as a registration requirement for people and labs trying to do the work.

Wolpe: We should clearly make it against the law in the U.S. to use CRISPR or any other tool of genetic engineering to alter the human germline at this point. I believe that there will come a time in the future when the benefits of such interventions may outweigh the risks, but we are not near that point now. The more difficult question is whether we should regulate such technologies in their applications to animals. Clearly there, too, we need to carefully think through human/animal hybridizing, but outside that, it is difficult to know where to draw a clear moral or regulatory line in controlling the alteration of animals (except, perhaps, exempting higher primates). After all, we have already altered many species profoundly, and it is hard to see how a careful application of genetic tools are fundamentally different.

We have been thinking about the implications of technologies like CRISPR for many years now, so I think we are well-prepared to think through the thorny ethical challenges CRISPR is bringing up. The real question is whether we have the will and the consensus to develop reasonable guidelines and regulations as a society.

Greely: The courts could decide the FDA doesn’t have authority, but I think that’s unlikely. Off-label limits would probably (maybe not certainly) require new legislation, always a potential roadblock.

On nonhuman, I am afraid that new federal legislation would be required. Getting good legislation passed is always a potential roadblock, even in a more normal political setting.

That’s just in the U.S. Doing anything both universal and fully effective across the world is nearly impossible, but we should try to build an international consensus on the non-human issues. On the human, different countries may go different ways.

Meslin: It is likely that there will be both moral and safety objections as there has been for in vitro fertilization, stem cell science and early gene therapy. The moral objections range from concerns about the manipulation of the germline to worries about the patenting or commercialization of the technology itself. The safety concerns, much like we saw with early recombinant DNA research include both potential dangers to the offspring of patients treated and to the environment. This is not to say these are all legitimate.

Perhaps the biggest impediment is the fear that attends any leap in science that promises a paradigm shifting technology. Addressing that fear, and the worries is as important as getting the regulations right.

Wolpe: Scientists in general do not like the government putting restrictions on promising technologies and, in their defense, such restrictions can often be heavy-handed and lack nuance. Second is the nature of the regulations themselves. In cases of emerging technologies their actual potential benefits and risks can be hard to assess, and therefore regulations can over or under control aspects or applications of those technologies that only become apparent later. Finally is the competitive problem. Restricting some of these technologies in the U.S. may end up meaning that other countries without such restrictions may move ahead to the U.S. in application of development of the technology.

Knowles: When a technology makes it easier, cheaper and faster for more people to do something, that is when discussions about how it should be used become urgent. Does CRISPR make it easier, faster and cheaper to create genetic modifications in living cells? Yes, it does. The time for discussion is now.

The responses have been edited for length and clarity.

Lila Shapiro covers the science fiction of science, the imaginative ways scientists are trying to solve the world’s hardest problems. Tips? Email Lila@huffingtonpost.com

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