Opinion: Human genome editing—we should all have a say

August 2, 2017 by Françoise Baylis, The Conversation
Controversial gene editing should not proceed without citizen input and societal consensus. Credit: Shutterstock

Shoukhrat Mitalipov, a reproductive biologist at Oregon Health and Science University, is nothing if not a pioneer. In 2007, his team published proof-of-principle research in primates showing it was possible to derive stem cells from cloned primate embryos. In 2013, his team was the first to create human embryonic stem cells by cloning. Now, in 2017, his team is reported to have safely and effectively modified human embryos using the gene editing technique CRISPR.

Mitalipov's team is not the first to genetically modify human . This was first accomplished in 2015 by a group of Chinese scientists led by Junjiu Huang. Mitalipov's team, however, may be the first to demonstrate basic safety and efficacy using the CRISPR technique.

This has serious implications for the ethics debate on human germline modification which involves inserting, deleting or replacing the DNA of human sperm, eggs or embryos to change the genes of future children.

Ethically controversial

Those who support human embryo research will argue that Mitalipov's research to alter human embryos is ethically acceptable because the embryos were not allowed to develop beyond 14 days (the widely accepted international limit on human embryo research) and because the modified embryos were not used to initiate a pregnancy. They will also point to the future potential benefit of correcting defective genes that cause inherited disease.

This research is ethically controversial, however, because it is a clear step on the path to making heritable modifications - genetic changes that can be passed down through subsequent generations.

Beyond safety and efficacy

Internationally, UNESCO has called for a ban on human germline gene editing. And the "Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine" – the Oviedo Convention – specifies that "an intervention seeking to modify the human genome may only be undertaken for preventive, diagnostic or therapeutic purposes and only if its aim is not to introduce any modification in the genome of any descendants."

In a move away from the positions taken by UNESCO and included in the Oviedo Convention, in 2015 the 12-person Organizing Committee of the first International Summit on Human Gene Editing (of which I was a member) issued a statement endorsing basic and preclinical research involving human embryos.

The statement further stipulated, however, that: "It would be irresponsible to proceed with any clinical use of germline editing unless and until (i) the relevant safety and efficacy issues have been resolved, based on appropriate understanding and balancing of risks, potential benefits, and alternatives, and (ii) there is broad societal consensus about the appropriateness of the proposed application."

Mitalipov's research aims to address the first condition about safety and efficacy. But what of the second condition which effectively recognizes that the belongs to all of us and that it is not for scientists or other elites to decree what should or should not happen to it?

Modification endorsed

Since the 2015 statement was issued, many individuals and groups have tried to set aside the recommendation calling for a broad societal consensus.

For example, in February 2017, the U.S. National Academy of Sciences and National Academy of Medicine published a report endorsing germline modification. It states unequivocally that "clinical trials using heritable germline genome editing should be permitted" provided the research is only for compelling reasons and under strict oversight limiting uses of the technology to specified criteria.

Seeds of change in Canada

In Canada, it is illegal to modify human germ cells. Altering "the genome of a cell of a human being or in vitro embryo such that the alteration is capable of being transmitted to descendants" is among the activities prohibited in the 2004 Assisted Human Reproduction Act.

Worried that "Canadian researchers may fall behind on the international scene" and that "restrictive research policies may lead to medical tourism," the Canadian Institutes for Health Research (with input from the Canadian Stem Cell Network) has begun to plant the seeds of change.

In its Human Germline Gene Editing report, CIHR hints at the benefits of changing the legislation. It also suggests professional self-regulation and research funding guidelines could replace the current federal statutory prohibition.

Future of the species

With the recent announcement of Mitalipov's technological advances and increasing suggestions from researchers that heritable modifications to be permitted, it is essential that citizens be given opportunities to think through the ethical issues and to work towards broad societal consensus.

We are talking about nothing less than the future of the human species. No decisions about the modification of the germline should be made without broad societal consultation.

Nothing about us without us!

Explore further: Genome editing in human cells

Related Stories

Genome editing in human cells

March 29, 2017

New techniques in molecular biology that enable targeted interventions in the genome are opening up promising new possibilities for research and application. The ethical and legal ramifications of these methods, known as ...

Recommended for you

World's smallest tape recorder is built from microbes

November 23, 2017

Through a few clever molecular hacks, researchers at Columbia University Medical Center have converted a natural bacterial immune system into a microscopic data recorder, laying the groundwork for a new class of technologies ...

A possible explanation for how germlines are rejuvenated

November 23, 2017

(Phys.org)—A pair of researchers affiliated with the University of California and Calico Life Sciences, has discovered a possible explanation regarding how human germlines are rejuvenated. In their paper published in the ...

1 comment

Adjust slider to filter visible comments by rank

Display comments: newest first

rderkis
not rated yet Aug 02, 2017
If any condition of a fully developed human being or child can be cured with stem cells or gene editing why do we need to mess with the reproductive end of it? In reality it is better for all of us if for example they could cure diabetes in us instead of just making it so no one else is born with it.

Now I can see this research as far as understanding EXACTLY how to make those changes in case of some unforeseen global emergency/need in the future.

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.