← Return to search results
Back to Prindle Institute

CRISPR and the Ethics of Science Hype

image of pencil writing dna strand

CRISPR is in the news again! And, again, I don’t really know what’s going on.

Okay, so here’s what I think I know: CRISPR is a new-ish technology that allows scientists to edit DNA. I remember seeing in articles pictures of little scissors that are supposed to “cut out” the bad parts of strings of DNA, and perhaps even replace those bad parts with good parts. I don’t know how this is supposed to work. It was discovered sort of serendipitously when studying bacteria and how they fight off viruses, I think, and it all started with people in the yogurt industry. CRISPR is an acronym, but I don’t remember what it stands for. What I do know is that a lot of people are talking about it, and that people say it’s revolutionary.

I also know that while ethical worries abound – not only because of the general worries about the unknown side-effects of altering DNA, but because of concerns about people wanting to make things like designer babies – from what my news feed is telling me, there is reason to get really excited. As many, many, many news outlets have been reporting, there is a new study, published in Nature, that a new advance in CRISPR science means that we could correct or cure or generally get rid of 89% of genetic diseases. I’ve heard of Nature: that’s the journal that publishes only the best stuff.

I’ve also heard that people are so excited that Netflix is even making a miniseries about the discovery of CRISPR and the scientists working on it. The show, titled “Unnatural Selection” [sic], pops up on my Netflix page with the following description:

“From eradicating disease to selecting a child’s traits, gene editing gives humans the chance to hack biology. Meet the real people behind the science.”

In an interview about the miniseries, co-director Joe Egender described his motivation for making the show as follows:

“I come from the fiction side, and I was actually in the thick of developing a sci-fi story and was reading a lot of older sci-fi books and was doing some research and trying to update some of the science. And — I won’t ever forget — I was sitting on the subway reading an article when I first read that CRISPR existed and that we actually can edit the essence of life.”

89% of genetic diseases cured. Articles published in Nature and a new Netflix miniseries. Editing the essence of life. Are you excited yet???

So the point of this little vignette is not to draw attention to the potential ethical concerns surrounding gene-editing technology (if you’d like to read about that, you can do so here), but instead to highlight the kind of ignorance that myself and journalists are dealing with when it comes to reporting on new scientific discoveries. While I told you at the outset that I didn’t really know what was going on with CRISPR, I wasn’t exaggerating by much: I don’t have the kind of robust scientific background required to make sense of the content of the actual research. Here, for example, is the second sentence in the abstract of that new paper on CRISPR everyone is talking about:

“Here we describe prime editing, a versatile and precise genome editing method that directly writes new genetic information into a specified DNA site using a catalytically impaired Cas9 fused to an engineered reverse transcriptase, programmed with a prime editing guide RNA (pegRNA) that both specifies the target site and encodes the desired edit.”

Huh? Maybe I could come to understand what the above paragraph is saying, given enough time and effort. But I don’t have that kind of time. And besides, not all of us need to be scientists: leave the science to them, and I’ll worry about other things.

But this means that if I’m going to learn about the newest scientific discoveries then I need to rely on others to tell me about them. And this is where things can get tricky: the kind of hype surrounding new technologies like CRISPR means that you’ll get a lot of sensational headlines, ones that might border on the irresponsible.

Consider again the statement from the co-director of that new Netflix documentary, that he became interested in CRISPR after he read about how it can be used to “edit the essence of life.” It is unlikely that any scientist has ever made so bald a claim, and for good reason: it is not clear what it means for life to have an “essence”, nor that such a thing, if it exists, could be edited. The claim that this new scientific development could potentially cure up to 89% of genetic diseases is also something that makes an incredibly flashy headline, but again is much more tempered when it comes from the mouths of the actual scientists involved. The authors of the paper, for instance, state that the 89% number comes from the maximum number of genetic diseases that could, conceptually, be cured if the claims described in the paper were perfected. But that’s of course not saying much: many wonderful things could happen in perfect conditions, the question is how likely they are to exist. And, of course, the 89% claim also does not take into account any potential adverse effects of the current gene editing techniques (a worry that has been raised in past studies).

This is not to say that the new technology won’t pan out, or that it will definitely have adverse side effects, or anything like that. But it does suggest some worries we might have with this kind of hyped-up reaction to new scientific developments.

For instance, as someone who doesn’t know much about science, I necessarily rely on people who do in order to tell me what’s going on. But those who tend to be the ones telling me what’s going on – journalists, mostly – don’t seem to be much better off in terms of their ability to critically analyze the information they’re reporting on. We might wonder what kinds of responsibilities these journalists have to make sure that people like me are, in fact, getting an accurate portrayal of the state of the relevant developments.

Things like the Netflix documentary are even further removed from reality. Even though the documentary makers themselves do not make any specific claims as to understand the science involved, they clearly have an exaggerated view of what CRISPR technology is capable of. Creating a documentary following the lives of people who are capable of editing the “essence of life” will certainly give viewers a distorted view.

None of this is to say that you can’t be excited. But with great hype comes great responsibility to present information critically. When it comes to new developments in science, though, it often seems that this responsibility is not taken terribly seriously.

When Your Will Is Not Enough: Ethical Restrictions on Entering into Agreements

CRISPR image

This article has a set of discussion questions tailored for classroom use. Click here to download them. To see a full list of articles with discussion questions and other resources, visit our “Educational Resources” page.


A 43-year-old with a deadly skin cancer is asking doctors to use the recent developments in CRISPR to experiment with treatments that may help him as well as advance medical understanding. Malakkar Vohryzek is offering to be a test subject, contacting a number of researchers and doctors asking if they would be interested in modifying his genetic code. Such treatment falls well outside approved parameters for human exposure to risk with the gene-editing technology, but the potential patient seems to be providing straightforward consent. In medicine and law, however, consent is often not enough. Currently the international scientific community remains critical of researchers in China that edited the genes of twin children last year, saying that such interference was premature and that the understanding of CRISPR and the impact on human subjects was not advanced enough for such research (for discussion see A.G. Holdier’s “Lulu and Nana: The Surprise of Genetically-Modified Humans”). Vohrysek’s case is interesting, though, because with a terminal illness and clearly expressed desire, why stick to standards that aim to promote and protect a subject’s welfare? If Vohrysek is willing to risk his health (what is left of it given his illness), why should doctors and researchers hesitate to proceed?

The ethics surrounding agreements or contracts incorporate a number of dimensions of our agency and the way we relate to one another. These standards attempt to take seriously the import of being able to direct one’s own life and the significance of the harm of manipulating the lives of others.

Paternalism is the term used to describe efforts to promote others’ best interests when those actions run counter to their expressed wishes. In such cases, someone believes that if a person’s will were effective, it wouldn’t promote what is in their best interests, and therefore interference is justified. The standard case of paternalism is that of a parent who overrules the will of a child. Say, for example, a 5-year-old wants ice cream for dinner but a parent disregards this preference and instead makes the child eat a nutritious meal believing that this will be better for the child. Typically, we think parents are morally justified in disregarding the child’s expressed preferences in circumstances like these. But when, and under what circumstances, paternalism can be justified outside of these clear-cut parent-child cases is much less clear. In Vorysek’s case, there is something paternalistic about not prioritizing the autonomous choice he is communicating. In general, regulatory standards are meant to promote subjects’ welfare and interests, but Vorysek isn’t a child, so what countervailing reasons apply here?

One class of cases where paternalistic interference is typically considered justified is where there isn’t a clear of expression of an agent’s will to interfere with in the first place. We may interpret the parent-child case in this way: a child hasn’t developed their full autonomous capabilities, therefore superseding their expressions of will when it runs counter to their best interests doesn’t seem as problematic as thwarting the will of a fully autonomous, mature adult. Vorysek, and other patients facing terminal prognoses who knowingly choose to expose themselves to risk, seem to be in a different class than those whose illness or condition of life diminishes their autonomy.

One barrier to truly just agreements is an unethical power dynamic founded on asymmetric information. For instance, if one party uses legal understanding and jargon to obscure the stakes and conditions of an agreement so that the other party can’t fully weigh the possible outcomes that they are agreeing to, this is intuitively not a fair case of agreement. These concerns are relevant in many legal contracts, for instance in end-user license agreements that consumers accept in order to use apps and software.

Another arena where there is often an asymmetry of technical understanding is in physician-patient exchanges (for discussion see Tucker Sechrest’s “The Inherent Conflict in Informed Consent”). In order to get informed consent from patients, physicians must communicate effectively about diagnoses, potential treatment options, as well as their outcomes and likely effects to patients who frequently do not have the breadth of understanding that the physician possesses. If a doctor does not ensure that the patient comprehends the stakes of the treatment choices, the patient may enter into agreements that do not reflect their priorities, preferences, and values. This asymmetric understanding is also the ethically problematic dimension of predatory lending, “the practice of a lender deceptively convincing borrowers to agree to unfair and abusive loan terms, or systematically violating those terms in ways that make it difficult for the borrower to defend against.”

But there remain further ethical considerations even when mutual understanding can be assured. It’s true that only when both parties to an agreement have a full grasp of the stakes and possible outcomes of the agreement is there the potential for each to weigh this information against their preferences, priorities, and values in order to determine whether the agreement is right for them. However, this doesn’t exhaust all ethical dimensions of making agreements. We could imagine that the 43-year-old patient seeking un-approved CRISPR treatments to be in such a position he might understand the risks and not be mistaken about how the facts of the matter relate to his particular values, preferences, and priorities. What ethical reservations are left?

Exploitation refers to a type of advantage-taking that is ethically problematic. Consider a case where an individual with little money is offered $500 in exchange for taking part in medical research. It could be the case that this is the “right” choice for them the $500 is sorely needed, say to maintain access to shelter and food, and the risk involved in the medical research is processed and understood clearly and the person determines that shelter and food outweigh the risk. In such cases, the ethical issue isn’t that a person may be entering agreements without understanding or against their best interests. Indeed, this individual is making the best choice in their circumstances. However, the structure of the choice itself may be problematic. The financial incentive for taking on unknown risk of bodily harm is a thorny ethical question in bioethics because of the potential exploitative relationship it sets up. When financial incentives are in place, the disadvantaged portion of a population will bear the brunt of the risk of medical research.

In order to avoid exploitation, there are regulatory standards for the kinds of exchanges that are permissible for exposing one’s body to risk of unknown harm, as in medical research. There are high standards for such research in terms of likelihood of scientific validity – the hypothesized outcome can’t just be an informed “guess,” for instance. Vorysek likely won’t find a researcher to agree to run experiments on him for fear that terminal patients, in general, will become vulnerable to experimentation. As a practice, this may be ethically problematic because patients are a vulnerable population and this vulnerability may be exploited the ethical constraint on agreements can be a concern even when making the agreement may be both in the individual’s best interest and satisfying their will.

This, of course, leads to tensions and controversy. Should Vorysek and others in similar positions be able to use their tenuous prognosis for scientific gain? “If I die of melanoma, it won’t help anyone,” he said. “If I die because of an experimental treatment, it will at least help science.”

Lulu and Nana: The Surprise of Genetically-Modified Humans

Photograph of Dr. He in a lab

On November 25th, Chinese geneticist He Jiankui shocked the scientific community by revealing that he had (allegedly) used CRISPR technology to edit the DNA of now-born human twins. Against the advice of both global experts and personal confidants, He’s team aimed to remove a gene sequence from Lulu and Nana’s genetic code in an attempt to render them resistant to illnesses like HIV, smallpox, and cholera. Since the story first broke, a spiral of unsettling details has unraveled, from the project’s murky treatment of informed consent, to its use of potentially forged signatures on approval forms, misleading statements made by He to his institution, and the curious retainment of a foreign PR firm to produce videos advertising the otherwise-secretive experiment – to say nothing of the fact that it’s unclear how He planned to actually test the success of his genetic edits without simply exposing Lulu and Nana to various diseases. Altogether, this mess led The Atlantic’s Ed Yong to assert that “If you wanted to create the worst possible scenario for introducing the first gene-edited babies into the world, it is difficult to imagine how you could improve on this 15-part farce.”

Neither the potential for He’s experiment, nor the recognition of its moral problems are new (Rachel Robison-Greene wrote on this very topic for the Prindle Post less than a year ago) and though the results of He’s experiment have yet to be published, the story has already engendered its share of outcry. Although gene-editing therapy has been tested in limited cases, those instances have been heavily monitored and specifically curtailed to only affect the individual patient being treated; not only did He circumvent the general advice of the scientific community and surprise the world with this news, but he claims to have edited Lulu and Nana’s germline in a way that will inevitably be inherited by any children they may eventually have. If true, the ramifications of He’s experiment for Lulu and Nana’s future is exceptionally large.

More broadly, He’s surprise has brought a bevy of important questions about the ethics of germline editing, the equality of persons, the risk of eugenics, and the role that factors like bias and socioeconomic status will undoubtedly play in the use of this technology in the future. Although these sorts of questions have long been simmering on the back-burner of ethical debates, He’s announcement (and the suggestion that there are other possible patients still unborn) has rocketed them into the spotlight with unexpected urgency; whereas ethicists may have once thought we had years to quibble about the particulars of theoretical cases involving genetically-modified humans, the deadline for such conversations has, apparently, already passed.

He’s actions, though officially cautioned against, were not explicitly prohibited. Although the last meeting of the International Summit on Human Gene Editing warned in 2015 that such experimentation would be ill-advised in the absence of a consensus over norms within the discipline, the lack of such consensus gave He the confidence to forge ahead unfettered. Most disturbingly, there exists at least some evidence that He actively ignored the little advice he did seek on the ethical implications of his work.

Famously, in response to the greedy motivations of Michael Crichton’s fictional InGen company in the blockbuster novel-made-film Jurassic Park, mathematician Ian Malcolm decries the short-sightedness of the gene-editing scientists who cloned dinosaurs back to life with the phrase “Your scientists were so preoccupied with whether or not they could, that they didn’t stop to think if they should.” There are many elements in Jurassic Park that are unrealistic; human hubris, particularly in the realm of potential scientific progress, is not one of them.

As of this writing, He has reportedly been detained by the Chinese government; at present, his future appears to be as uncertain as Lulu and Nana’s. One thing that is not uncertain: as our collective technological capabilities increase exponentially, the need for informed ethical advisors on scientific projects (and scientific researchers informed about ethical principles) are needed now more than ever.

CRISPR, Moral Obligations and Editing the Human Genome

A close-up image of a scientist examining DNA test results

As our understanding of the human genome improves, pathways leading in the direction of new and powerful technologies are cleared.  In recent years, scientists have developed a new technique called CRISPR, which allows them to edit the genome—adding, subtracting, or deleting pieces of genetic code.  This process has the potential to bring about significant changes in human health.  CRISPR could prevent children from being born with a wide range of painful or life-threatening conditions.  So far, scientists have used this process in attempts to prevent blood disorders, allergies, heart disease, and to mutate the genome in such a way that the resulting person is less likely to get HIV.   Continue reading “CRISPR, Moral Obligations and Editing the Human Genome”

Iceland Has Almost Eliminated Down Syndrome through Selective Abortion. Is That a Good Thing?

Ultrasound image

A recent article from CBS News reported that almost 100 percent of pregnant women in Iceland choose to terminate their pregnancy, should a pre-natal screening test come back positive for Down Syndrome. Nearly 85 percent of all pregnant women in Iceland take this optional test. Only around one or two children are now born in Iceland with Down Syndrome per year. On the other side of the Atlantic, the Ohio state legislature is currently considering bills to criminalize selective abortion done for terminating a fetus with Down Syndrome. Obviously, opinions differ drastically on the moral permissibility of the termination of Down Syndrome pregnancies.

Continue reading “Iceland Has Almost Eliminated Down Syndrome through Selective Abortion. Is That a Good Thing?”

Genome Editing: A Slippery Slope?

On September 18th, a research team from the Massachusetts Institute of Technology released a report detailing advancements in the genome-editing CRISPR system. The CRISPR system releases an enzyme that cuts and removes certain sections of DNA that are damaged or mutated and replaces them with a healthy DNA sequence. However, these scientists discovered a new enzyme, Cof1, which may now serve as an alternate to the previously used enzyme Cas9. Using this new enzyme, research teams have the ability to narrow their focus to very specific sections of the DNA double helix. Additionally, the CRISPR system cuts DNA in a different way, improving the efficiency and quality of the repair site.

Continue reading “Genome Editing: A Slippery Slope?”