Sunday December 06, 2015

Debating the ethics of gene editing

An artist's illustration of a DNA double helix. Genes make up only a small part of human DNA, and until recently, the function of the rest of the genetic material was unclear. The new Encyclopedia of DNA Elements aims to identify the purpose of the other previously misunderstood building blocks of the human genome.

An artist's illustration of a DNA double helix. Genes make up only a small part of human DNA, and until recently, the function of the rest of the genetic material was unclear. The new Encyclopedia of DNA Elements aims to identify the purpose of the other previously misunderstood building blocks of the human genome. (Handout/National Human Genome Research Institute/Reuters)

Listen 13:28

The International Summit on Human Gene Editing met this week to address questions on altering the DNA of sperm, eggs, or early embryos — the human "germline" — so that the repairs are passed down to any future children. 

Proponents of gene editing are excited about the potential to learn more about cancer, and to eliminate genetic diseases like Huntington's disease and cystic fibrosis. But critics say there are so many ways for the process to go wrong, or to be misused, that it's best left alone. 

We asked Timothy Caulfield and Margaret Somerville to join us to debate gene editing. Caulfied, a Canada Research Chair in Health Law and Policy at the University of Alberta, argues gene editing promises a stronger, healthier future for humanity. Margaret Somerville, founding director of the McGill Centre for Medicine, Ethics and Law, says tinkering with future generations crosses an ethical line. Her new book "Bird on an Ethics Wire: Battles about Values in the Culture Wars" includes a discussion of human germline gene editing.

Caulfield says the potential benefits of gene editing are exciting, and worries that fears for the future will lead to an outright ban. Instead, he says society and governments should discuss where they want to draw the line on what's right and wrong when it comes to gene editing, and draw up regulations to ensure the line is not crossed. He says similar regulations have already been written for other areas that once caused concern, for example cloning and IVF. 

"So the fear that I have...is a broad ban is going to potentially stifle research that will increase our knowledge and would hopefully one day lead to better health." - Timothy Caulfield

But Somerville says it doesn't matter what the potential benefits are: it's wrong to mess with the human germline, the genes passed on from generation to generation. She says by changing a person's genetic structure, you are changing the intrinsic essence that makes them who they uniquely are. She cites German philosopher Jürgen Habermas, who says a person who has been genetically designed is not free to create themselves and will never be equal to a person who designed them.

"My position is that it doesn't matter whether you can make it reasonably safe, because it's inherently wrong to do this."  - Margaret Somerville

Click the blue button above to listen to the full debate.