Modification of genes in embryos could mark turning point

It appears to be a accomplishment — and possibly a turning point in human development. In a study published last week, scientists at Oregon Health and Science University confirmed they could change genes in embryos that were viable, demonstrating the potential.

In cases like this, that meant fixing and replacing a gene that causes a deadly and common heart disease. However, the chances heralded by technologies are endless divided as they are daring. In certain visions, it causes a population of designer babies or “consumer eugenics.” Where individuals live free of disease, others envision a utopia of advancement, and conditions are eradicated for the betterment of humankind. Is the subject of much debate.

“The big thing that is making the ethics and scientific community becoming excited, and on the flip side just a little bit hot and bothered, is it is a mechanism to modify genes for a number of generations,” says Dr. Alice Virani, a genetic counsellor and director of ethics in British Columbia’s Provincial Health Services Authority. “There are two ways to look at it, the more realistic effects and the sci-fi, if-this-was-out-of-control effects”

The team in the Oregon university’s Center for Embryonic Cell and Gene Therapy utilized technology named CRISPR, or Clustered Regularly Interspaced Brief Palindromic Repeats, to fix or edit the gene carrying the heart disease, apparently with greater success than previous efforts by scientists in China.

Many in the area have expected news of this researchfor the questions it raises about health, reproduction and society and to what it implies for the eradication of a disease such as cardiomyopathy.

After the research was leaked days ahead of its publication in the journal Nature, its lead scientist, Dr. Shoukhrat Mitalipov, attributed the discharge into “probably a mix of hot words: CRISPR, gene-editing, and designer babies.”

The analysis — and its blend of words that are hot — did not disappoint.

The New York Times hailed the “landmark in research,” while The New York Post cried BABE NEW WORLD and explained “an amazing — and slightly frightening — breakthrough{}” A headline Vox announced This Is Huge.

Even actor Ashton Kutcher tweeted about the scientific breakthrough, writing: “Scientists successfully utilized CRISPR to repair a mutation that leads to disease. This is the reason I wanted to be a geneticist!”

The tweet sparked one of his followers the exact same assortment of responses which are always so keenly tied to the dilemma of changing human anatomy, from hope that catastrophic conditions like muscular dystrophy will be eradicated, to worry about the unknown consequences of “playing God.”

Dr. Timothy Caulfield, a Canada Research Chair in Health Law and Policy and professor in the University of Alberta, says that the polarized and striking response he’s seen lately reminds him of premature response to stem-cell science, in which he says, “It was going to be cloned armies, or we were going to eliminate all disease.”

Neither has proven to be the case, and therefore it could be with gene editing.

“We will need to be careful to not accept the benefits and be careful not to hype the ethical concerns,” he says. “There are real issues on both sides of the argument but let us make sure our discourse is evidence-formed.”

He explained the new study as “a genuinely fascinating area,” and stated the possibility of CRISPR — that is used not just in human genetics, but also has potentially revolutionary applications for agriculture, animals, plants and food — “has introduced equally exciting possibilities and reasons for profound policy reflection.”

Erika Kleiderman, a lawyer and academic whose work concentrates on gene-editing engineering, stem-cell research and regenerative medicine in the Centre of Genomics and Policy at McGill University, says that the Oregon team’s study is exciting because it affirms the ability of CRISPR technology to fix genetic mutations, and determines the basic security of the technique in a study context. And while she said people frequently go straight to considering the prospect of manipulating genes to make so-called designer babies, “a concept that’s cool but also rather frightening,” the health care implications might be both staggering, and are a lot more likely.

“For instance, something such as Huntington disease,” she says. “Being able to protect against that or treat that one day, in my estimation, would be a amazing jump for our scientific knowledge and medical progress. That being said, the argument that is eugenics will be raised by people. Is that a possibility? Yes. Are we close to this? I do not think so.”

Canada has laws about editing and genetic modification, and changing genes is a criminal offence punishable with fines up to $500,000 or 10 years.

But while the technology takes a massive step forward, Ms. Kleiderman and Dr. Caulfield and are one of a group of Canadian scientists and professors calling for less regulation about genetic science and study in Canada, not more.

Both have been involved in the creation of an editorial published Regenerative Medicine in January calling for a revision of policy, and consideration of the ethics and issues involved with gene screening.

“A criminal ban is a suboptimal policy instrument for mathematics because it’s inflexible, stifles public debate, and hinders responsiveness to the evolving nature of mathematics and social attitudes,” the editorial read. It was signed by seven experts and ethicists, and came from a think tank on the future of gene editing in Canada last summer, held at McGill.

Dr. Caulfield says legal prohibition of particular genetic research does not make sense once we do not yet know or know where the science is going, or what the benefits or harms could be. He says that he believes in law in areas that are problematic, while allowing for trials and research. He says that a number of the “slippery slope” situations people dread — such as using genetic modification for human improvement and to attain superficial traits like height — stay distant chances given the complexity of the science.

That isn’t to say there aren’t problems or risks to be addressed as the technology continues to evolve. Ms. Kleiderman claims that includes consideration of the possible threat to future generations, the protection of the technology and other irrevocable, if unintended, consequences, although she says those risks aren’t unique to gene modification but accurate of technologies.

“When it comes to CRISPR, one of those places it would be most beneficial is with the treatment of prevention of disorder that I think most people are in agreement with,” she says. “Obviously, we will need to be mindful of performing not-so-positive items with it, like going down the enhancement route.”

She said potential issues, like the preservation of diversity and identity, the welfare of children and the prospect of creating new types of discrimination, inequality or social conflict, all require study and consideration.

There’s time. There is a ways before gene editing is used in human trials even though the technology is moving fast. Even then, Dr. Virani says for the near future the technology will probably be employed by a small group of people in specific scenarios related to the avoidance of serious genetic disease.

“I am not saying we should not be worried about those potential problems, but we make that jump too fast,” she said. “We do not necessarily [believe] that the most likely scenario is that couples may use this technology on a really limited basis if they know their child may potentially have a devastating genetic illness. That is not something that everybody will start to do. I believe there is sometimes that jump to, ‘Oh, we could make designer babies,’ but I think we are very much in the lessening-burden-of-disease stage as opposed to the designer-baby stage, though that is where people’s minds go.”

Dr. Virani said among her own concerns is the possibility of “off-target effects,” where altering a gene unexpectedly alters something else in the genome. Other issues are fact than science fiction, including the ability and the technology may be accessible. Eradicating a disease is 1 thing. Eradicating it just is another.

“So is it going to look like just the wealthy are likely to be able to pay for this sort of technology?” she asks. “That is very debatable in my eyes from an ethics perspective, and considering fairness in society. Then the lobby is diminished if poor individuals get Huntington disease. It is kind of like a two-fold bad effect.”

On Thursday, the American Journal of Human Genetics conducted a policy statement signed by 11 organizations from all over the world, including the Canadian Association of Genetic Counsellors, advocating a “careful but pro-active approach” as the science moves forward. The statement contains an arrangement that gene editing should not be done in embryos carried to pregnancy. (The embryos used in the Oregon study were created just for the research, and weren’t developed further.) It outlines a range of criteria which needs to be fulfilled before trials supports funding, and occur. The U.S. government doesn’t permit federal funding for genetic research on embryos. The university financed the Oregon research.

“We do not want it to go speeding forward,” stated Kelly Ormond, the lead writer of this policy statement and a genetics professor at Stanford University in California. “We need people to be very clear about what is happening and we need things to undergo superior ethics review, and for society to really be engaged in such dialogues now while this study is just beginning to happen.”

She said she believes it is essential to be pro-active in thinking about the issues about the technology and speaking, and beginning a conversation of gene editing needs to and will be utilized.

“We can all agree that world [of eugenics and designer babies] does not feel really comfortable, and I believe most people do not need to go there,” she said. “So we will need to figure out ways to stop that from occurring.”

Also on the Planet and Mail

Scientists repair gene mutation with ‘scissors’ (The Associated Press)

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