11 organizations urge cautious but proactive approach to gene editing

August 3, 2017, American Society of Human Genetics
Credit: CC0 Public Domain

An international group of 11 organizations with genetics expertise has issued a policy statement on germline genome editing in humans, which recommends against genome editing that culminates in human pregnancy; supports publicly funded, in vitro research into its potential clinical applications; and outlines scientific and societal steps necessary before implementation of such clinical applications is considered.

Published August 3 in The American Journal of Human Genetics, the statement was jointly authored by the American Society of Human Genetics (ASHG), the Association of Genetic Nurses and Counsellors, the Canadian Association of Genetic Counsellors, the International Genetic Epidemiology Society, and the National Society of Genetic Counselors. It was also endorsed by the American Society for Reproductive Medicine, the Asia Pacific Society of Human Genetics, the British Society for Genetic Medicine, the Human Genetics Society of Australasia, the Professional Society of Genetic Counselors in Asia, and the Southern African Society for Human Genetics.

"Our workgroup on genome editing included experts in several subfields of as well as from countries with varying health systems and research infrastructure," said Kelly E. Ormond, MS, CGC, lead author of the statement and Professor of Genetics at Stanford University. "Given this diversity of perspective, we are encouraged by the agreement we were able to reach and hope it speaks to the soundness and wider acceptability of our recommendations," she said.

The CRISPR/Cas9 system, a genome editing tool introduced in 2013, has quickly become widely used in genetics research due to the ease with which it can be customized and its effectiveness across cell types and species. There is considerable interest in using this tool in somatic cells—to develop cell-based therapeutics, for example—as well as in , the focus of this statement and an ethically more complex issue because of potential effects on not just the treated individual but also future generations.

"While germline genome editing could theoretically be used to prevent a child being born with a disease, its potential use also raises a multitude of scientific, ethical, and policy questions. These questions cannot all be answered by scientists alone, but also need to be debated by ," said Derek T. Scholes, PhD, ASHG Director of Science Policy.

After considering these issues and the current state of the science in germline genome editing, the statement authors agreed that:

  • At this time, it is inappropriate to perform germline gene editing that culminates in human pregnancy, and
  • There is currently no reason to prohibit in vitro (outside of a living organism) germline genome editing research, with appropriate oversight and consent, or to prohibit public funding for such research.

Further, they agreed that before any future clinical application of genome editing takes place, there should be:

  • A compelling medical rationale to use this approach
  • An evidence base to support its clinical use
  • An ethical justification, and
  • A transparent and public process to solicit and incorporate stakeholder input

"As basic science research into editing progresses in the coming years, we urge stakeholders to have these important ethical and social discussions in tandem," said Professor Ormond.

Explore further: New gene editing tools force renewed debate over therapeutic germline alteration

More information: Ormond KE et al. (2017 Aug 3). ASHG policy statement on human germline genome editing. The American Journal of Human Genetics. DOI: 10.1016/j.ajhg.2017.06.012

Related Stories

New gene editing tools force renewed debate over therapeutic germline alteration

May 1, 2015
Recent evidence demonstrating the feasibility of using novel CRISPR/Cas9 gene editing technology to make targeted changes in the DNA of human embryos is forcing researchers, clinicians, and ethicists to revisit the highly ...

Guidelines for human genome editing

January 21, 2016
Human genome editing for both research and therapy is progressing, raising ethical questions among scientists around the world.

Like a cut-and-paste tool, gene editing transforms research

August 2, 2017
Gene editing is getting fresh attention thanks to a successful lab experiment with human embryos. But for all the angst over possibly altering reproduction years from now, this technology already is used by scientists every ...

Recommended for you

Progress in genetic testing of embryos stokes fears of designer babies

November 16, 2018
Recent announcements by two biotechnology companies have stoked fears that designer babies could soon be an option for those who can afford to pick and choose which features they want for their offspring. The companies, MyOme ...

Gene editing possible for kidney disease

November 16, 2018
For the first time scientists have identified how to halt kidney disease in a life-limiting genetic condition, which may pave the way for personalised treatment in the future.

DICE: Immune cell atlas goes live

November 15, 2018
Compare any two people's DNA and you will find millions of points where their genetic codes differ. Now, scientists at La Jolla Institute for Immunology (LJI) are sharing a trove of data that will be critical for deciphering ...

Ashkenazi Jewish founder mutation identified for Leigh Syndrome

November 15, 2018
Over 30 years ago, Marsha and Allen Barnett lost their sons to a puzzling childhood disease that relentlessly attacked their nervous systems and sapped their energy. After five-year-old Chuckie died suddenly in 1981, doctors ...

Drug candidate may recover vocal abilities lost to ADNP syndrome

November 15, 2018
Activity-dependent neuroprotective protein syndrome (ADNP syndrome) is a rare genetic condition that causes developmental delays, intellectual disability and autism spectrum disorder symptoms in thousands of children worldwide. ...

The puzzle of a mutated gene lurking behind many Parkinson's cases

November 15, 2018
Genetic mutations affecting a single gene play an outsized role in Parkinson's disease. The mutations are generally responsible for the mass die-off of a set of dopamine-secreting, or dopaminergic, nerve cells in the brain ...

0 comments

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.