Should we regulate genetic advantage?

The genetic lottery hands us different advantages. Should these be competitively protected? We asked the public to see what they thought.

The prospect of genetically modifying ourselves, or our future children, is no longer science fiction. In a field mired with controversy, the one thing all agree on is the urgent need to engage with “the public”. So, dear member of said public, what are your opinions on genetic modification of humans?

Consider the following, hypothetical, scenario:

Scientists have discovered Gene Z relates to success in long distance competitive running. Gene Z enables more oxygen to be carried in the blood. Gene Z is not enough on its own; hard work, training, and diet are important contributing factors to winning.

It is well known that scientists can now give Gene Z to people who are not born with it, at low cost. Some people will experience side effects, including higher likelihood of injury.

Many race winners in the past 50 years have had Gene Z. A person without Gene Z would be less likely to win, even with hard work, training, and the right diet.

And now ask yourselves where you fall on the scale of Disagree — Indifferent — Agree in reaction to the following two statements.

  1. People who have chosen to acquire Gene Z should be permitted to race with people who were born with Gene Z.
  2. People who have chosen to acquire Gene Z should be permitted to race with people who have chosen not to acquire Gene Z.

My co-author and I put this to the US-based public (article published in the Harvard Journal of Law and Technology, freely available here). If you agreed or were indifferent with the first statement, you are in good company: the vast majority (79%) responded the same way. And if you agreed or were indifferent to the second statement, you also answered with the majority (54%).

While the scenario is hypothetical, recently it has become much more than idle fancy. The genetic variant is based on a real one possessed by a champion Nordic cross-country skier and CRISPR, a technology that acts like molecular scissors to make precise modifications to the genome, is the basis for many gene therapies currently in clinical trials. In November 2018 a Chinese scientist claimed that two baby girls had been born after he CRISPRed them as embryos.

There remain numerous scientific and technical challenges for this technology. As it continues to rapidly mature, the ethical, social and legal issues become more immediate. How should we start to think about these things? One place to begin is by bringing into focus four different classes of application.

The scientific community has placed the most stress on the difference between heritable and non-heritable applications, because the former can impact not only the individual modified, but all their future progeny. In the lingo, these changes “enter the human gene pool”, which is seen as a commons of humanity to be protected.

When the public are asked, however, they don’t see this difference as particularly significant. Instead, the difference between therapeutic and enhancement applications drives divergent views. But this distinction between therapy and enhancement is problematic. For example, are applications that prevent sickness (rather than curing it) therapies or enhancements? Any attempt to make the distinction between therapy and enhancement will need to make an appeal to what counts as normal. Where does the therapy/enhancement line lie in the following examples:

  • If you have your eyes lasered and it was an option to end up with vision better than the “normal” good vision of 20/20, would it be an enhancement? Should you be compared to the average eyesight of the population, or to that in your age bracket?
  • Consider the case of a male who needed to take testosterone supplements for health reasons. The “normal” levels of testosterone vary depending on ancestral population: for example Swedish males have much higher levels of testosterone than Korean males.
  • Hermione had very large front teeth. When Draco’s hex in The Goblet of Fire makes them grow larger still, she has Madam Pomfrey shrink them back a little smaller than their original size. Is this an enhancement because her teeth are no longer the size they originally were? That is, does normal mean, in some sense “normal for you”?

It becomes obvious that any attempt at drawing a line between therapy and enhancement is context dependent. This is very problematic if you want to regulate to say that therapy = okay, enhancement = not okay.

Sports is the one domain that already has such regulations. The World Anti Doping Association (WADA) has labeled genetic modification for performance enhancement “gene doping”, and prohibited it. Why? Because they see it as in conflict with “the dedicated perfection of each person’s natural talents”. They call this “the spirit of sport”, and their raison d’être is to protect it. To this end, they have invested millions in developing tests to detect gene doping.

Returning to my example of “Gene Z”, which confers a performance advantage for long-distance running, how did you feel about allowing genetically modified runners to compete? The majority of people we asked did not necessarily see genetic modification for performance enhancement as unfair. Why? We propose that technologies like CRISPR highlight how unfair the genetic lottery is in the first place. The question then becomes, why should luck in genetic advantage be competitively protected? We could instead embrace a vision of sport, and for life more broadly, which rewards us for the choices we make.

This is not to say that we should hold back from any and all regulation of genetic modification; there are a slew of additional considerations. But we do think the prospect of genetic modification for performance enhancement forces us to think about what counts as fair. New technology can and should force us to reappraise what matters.

Bioethics, Genomics, and the Diversity of Human Experience