Updated: Oct 17, 2020
Image: NIH Image Gallery
Genetic editing has become infamous for its controversial uses. Yet these are a small minority of total uses in the medical system. Most people do not know what genetic editing is or what its broad range of uses accomplish. With so many unknowns and public misunderstanding, there needs to be more clarity, honesty, and understanding of the benefits and risks of genetic editing in the human context.
Understanding Genetic Editing
Genetic editing is a catch-all phrase referring to a group of technologies that accomplish approximately the same task — the editing of an organism’s DNA by adding, removing, or altering genetic material. CRISPR-Cas9 is the most well known and most powerful genetic editing technology. To use an analogy, CRISPR is to genetic editing what a word processor is to the editing of, say, a long essay. A word processor allows for faster, cheaper, and easier resolutions to undesired parts of the essay. Through cutting and pasting, changing small parts of the essay can vastly improve the overall quality — the same principle applies to genetic editing. And in the case of genetic editing, it is truly small parts — the alteration of a single gene out of the approximately 21 000 genes every human has can make a life-changing difference.
The potential for improvements to human life has wide-ranging implications. Duchenne muscular dystrophy (DMD), which causes progressive muscle degeneration, reduces life expectancy to one’s mid-20s. Despite its terrible effects, it is caused by a mutation in a single gene. Amazing medical research is beginning to see results that could potentially stop muscular degeneration in patients. The potential for this technology is only limited by the number of outcomes caused by genetic expressions — and society’s willingness to engage with it. Such potential creates ethical dilemmas that need to be reconciled with by not only the scientific community but the general public and our policymakers.
The first ethical dilemma pertains to the somatic-germline distinction. Somatic genetic editing alters nonreproductive cell types like bladder or lung cells, eliminating the possibility that the specific genetic change will be passed down to offspring. Conversely, germline editing alters reproductive cells like eggs and sperm. These genetic alterations can be passed down to offspring, making them permanent. There is much debate as to whether genetic editing should be restricted to simply non-reproductive cells to prevent playing ‘God’ with the human genome.
The second ethical dilemma pertains to the therapy-enhancement distinction. Therapy, in this case, is defined by the improvement of one’s well-being through the treatment of diseases. Enhancement is defined as enhancing the human condition beyond what is considered ‘normal’. Therapy is widely accepted as the vast majority of healthcare performs this already, but enhancement does not enjoy the same acceptance. While there may be procedures such as plastic surgery, most people are not tolerant of genetic enhancement.
These dilemmas create essentially four categories in which one can interpret the purpose of any individual genetic editing procedure: somatic genetic therapy, germline genetic therapy, somatic genetic enhancement, and germline genetic enhancement. These are not new terms — they were coined by David Resnik two decades ago — but it is only in recent years that people have had to seriously consider the implications of these distinctions.
The example of DMD mentioned above easily fits into somatic genetic therapy, but what if there was a procedure to treat deafness? Would this be a ‘therapy’? There is a significant movement within the deaf community that argues treating their deafness would not be a therapy because they argue deafness is not abnormal or less than non-deafness, only different. Similar arguments are made surrounding Down Syndrome. The medical community is moving ahead on both of these fronts so it is up to the public and policymakers to make decisions about whether these procedures should be allowed.
Even more controversial are the possibilities surrounding the genetic editing of embryos. Unfortunately, this is where the greatest potential lies. There are a number of diseases that either currently or in the near future could be detected prior to birth. Procedures such as gene therapy for DMD on an embryo could save the eventual human from a lifetime of suffering and extend its life three-fold.
Finally, regarding the enhancement of humans, the line may be difficult to draw. CRISPR-Cas9 is able to suppress aging, increasing healthspan, which to many may be acceptable. Going a little further, enhancements could improve intelligence. Most people would like to be smarter, but to medically induce greater intelligence raises questions of inequality, what defines intelligence, and even eugenics — a history that genetic editing has yet to shed.
Another issue with enhancement is that some argue that enhancements include procedures that would prevent a disease from occurring later in life. For example, someone that is identified as at risk for breast cancer could have a genetic procedure performed to drastically reduce their likelihood of getting breast cancer. Are they an enhanced human, much less likely to get breast cancer than the average female? Or are did they simply have preventive treatment? The discussion is ongoing.
These dilemmas are real, and every individual should consider them thoughtfully. In my experience of doing so, many of my initial fears have faded. There should be universal availability for the vast majority of procedures that fall under somatic and germline genetic therapy. For those that are concerned that these procedures may be ‘playing God’ should consider that other non-genetic therapies are also altering the outcomes of people’s lives by medical intervention. Moreover, as long as these procedures are within the confines of a universal healthcare system, they should not contribute to increased inequality or malicious intent any more than current therapies do.
Circling back to controversial therapies for Down Syndrome or deafness, there should be societal and policy discussions on what to include in this category. For those in this category, there should be optional therapies as there is a portion of the population that would desire a medical intervention and there is a portion that would not desire such intervention.
As for enhancements, there certainly needs to be lines drawn, but these do not need to be radically different from the current lines drawn in our medical system today. Any genetic procedure that is simply avoiding the potential for an identified risk should be allowed, i.e. a procedure to avoid breast cancer. Where the line should be drawn will not be discussed here because it should be a societal discussion, but there is one to be drawn.
Regulations in Canada
Since 2004 Canada has essentially severed somatic genetic editing and germline genetic editing through policy. The Assisted Human Reproduction Act of 2004 (AHRA) makes all germline genetic editing illegal regardless of purpose. Specifically, the AHRA states, “no person shall knowingly […] alter the genome of a cell of a human being or in vitro embryo such that the alteration is capable of being transmitted to descendants” (s.5(1)(i)) creating an effective ban on all use.
Somatic genetic editing functions under a regulatory system that allows research and coverage under Canadian healthcare systems. Current coverage for somatic genetic therapies is extremely limited and the approval process is slow though, especially compared to availability in the United States. While there is a foreseeable change to come in somatic genetic editing in Canada, germline genetic editing will require new or amended legislation.
In light of the needed scientific, public, and parliament debates, there are a number of recommendations that should be considered now for the betterment of Canadians and the global community in the future. To fully embrace science for all of its benefits and pursue pragmatic solutions to real problems facing Canadians, regulations and laws should be reviewed for germline genetic editing and funding should be reviewed for research overall.
Firstly, (s.5(1)(i)) of the AHRA should be revised to enable academic institutions and institutes to begin germline genetic editing research that would promote scientific and societal value. This would allow vital research on the efficacy and potential applications of germline genetic editing that reduces costs and increases the healthspan of Canadians to go ahead. Criminal bans on such scientific research provide no value to society, instead, they reduce Canadian competitiveness, harm Canadian well-being, and stymie overall progress. This is a call that Canadian researchers are making across the country.
Secondly, there should be ongoing communication with the scientific community and healthcare industry, which in this field appears to be stagnant, about how best to maintain an effective regulatory process that can promote effective research and development of Canadian discoveries. Lastly, there should be greater funding for R&D and the appropriate economic tools used to promote an innovative centre for genetic editing in Canada so that it can become a world leader in the understanding and usage of genetic editing technologies.
This is not to mention the cost-effective nature of genetic editing technologies. Diseases and disorders that can be treated before birth or early on in life prevent the high costs of years of treatment from classical drugs. The benefits of genetic editing are live-saving, health-improving, and cost-effective technologies.
Democratizing the Debate
In concert with the above policy recommendations there needs to be public consultations and serious discussions in parliament regarding the very real ethical dilemmas that Canadians and the global community face with genetic editing. What should not be done is to ignore these issues through continued bans. Canadians are ready for these conversations.