• Amelia C.

The Ethics of Coding Living Things

One area of the biotech industry I find particularly interesting is genetic engineering.

For the past few months, I've been closely following the race between three similar publicly traded companies, all of which are competing to get the first genome editing treatment to market. Their weapon of choice is a gene editing biotechnology called CRISPR-Cas9.

The three companies, which should have updated third quarter financials out this week, are:

In my last post on this topic, I gave an overview of the genome editing landscape and described how it's positioned to be the next generation of genetic engineering.

Since I’m always intrigued by the ethical debates surrounding scientific research and applications, I thought it would be interesting to discuss some of the moral topics surfacing around genome editing. As the FDA has not yet approved therapies leveraging CRISPR-Cas9, there are many speculations surrounding what genome editing could mean for life as we know it.

Morals and Ethics

My views on ethics are this: As long as no one is being hurt or having something done to them against their will, then have at it. I believe as long as no one is harmed in the making, people should have the freedom to do what they want.

Public Opinion

The tough part about public opinion on science is it’s just that: opinion.

Not everyone with an opinion is a scientist. Sometimes uneducated or impulsive public outcry can have negative impacts on advances that would otherwise be hugely beneficial. And this applies to more facets of life than just science.

I can say this first hand as it was the case with me a few years ago, when I assumed that all genetic modification was bad due to not wanting to eat GMO foods. It wasn’t until I put in the time and effort to really educate myself on the science that I saw genetic engineering was nothing to fear, but rather, something to embrace.

Since people tend to fear that which they do not understand, I have broken down three of the bigger controversies and listed the underlying fear that is likely at their root.

The three big ethical controversies surrounding gene editing are:

  1. Designer babies

  2. A greater socioeconomic divide between those who can afford access to future superior genetic therapies and those who cannot

  3. Using human genetic engineering for cosmetic purposes.

1) Designer babies

To see where this fear comes from, it helps to understand the difference between editing germline and somatic cells.

Germline gene editing

Germline gene editing takes place in egg and sperm cells, which cause changes to be passed along to parents’ offspring.

Somatic gene editing

Somatic (body) cell editing takes place in adult cells that change only the recipient’s genome, but do not pass on changes to offspring.

The two are being confused; it’s germline that has the longer-term impact

Germline editing is the more controversial of the two. Because the genes of an unborn human are being augmented before they’re born, some argue this is non-consensual change being inflicted on the unborn child.

The other part of the germline editing controversy is that the passing along of traits is potentially dangerous and/or non-consensual to the recipient (the unborn baby).

Going back to why it is important to comprehend the difference between the two types of cells within which DNA is being altered is that with somatic cells, the aforementioned fears are not applicable.

The majority of treatments gene editing companies are developing today are of the somatic sort, focusing on an existing disease a patient is suffering from.

Problems arise when those vocalizing protest against genome editing in humans do not discern between the two types and lump all gene editing into the embryonic category.

I see the concern over (true) embryonic edits, but in terms of genetically engineering somatic cells that will not be passed on or affect anyone but the owner of those cells, that is their choice.

2) Widening the socioeconomic divide between the haves and the have nots

Regardless of cell type undergoing gene editing, the topic of who will have access to gene therapies and the fears surrounding the idea that only those of higher socioeconomic status will be able to afford them are prevalent.

This fear manifests from the idea that if only certain people could have their genes edited, it would result in a select few possessing traits perceived as “desirable”.

I understand the Elysium-like fear of an unforgiving, utopian/dystopian societal split, but there are some issues with this fear.

Same Problem, Different Tech

In terms of health, this apprehension is actually an extension of an underlying existing problem: healthcare affordability.

If people fear not being able to afford gene treatments to prevent or reverse health conditions, that is not a genetic engineering problem; it's an infrastructure issue.

In an example of "treat the cause, not the symptom," this needs to be addressed at the root to help siphon off permeation into new technologies.

Instead of asking "will gene editing be fair?" the questions we should be considering are:

Why are medical treatments and procedures so astronomically expensive in the first place?

Are stringent government regulations making the barriers to entry so high, competition is unable to level the pharma business playing field?

3) Using genetic editing for cosmetic purposes

The third fear, and in my opinion, one of the more interesting, is that surrounding the inevitable leveraging of CRISPR-Cas9 gene editing for aesthetic purposes.

Since I think people should have the freedom to express themselves with their looks (given it is not overly offensive or hurting others), I am absolutely not in support of this argument.

Who cares if this technology is used also for cosmetic purposes? Botox is used for both medical (bruxism, sweating, etc.) and cosmetic purposes. Dermal fillers can be used to restore confidence to patients with diseases that cause dramatic weight loss and breast implants can restore the same for those who have needed to undergo a mastectomy.

Confidence and mental wellbeing are as much a part of health as drugs and operations are.

I believe this is partly rooted in the fear of affordability and that only those who can afford cosmetic genetic augmentation will be able to receive it.

This could be true, but it’s already the case with cosmetic enhancements today.

Wealthy individuals have access to aesthetic procedures and given they don’t get addicted to injectables, can definitely enhance their appearances.

Granted, gene editing could have the ability to make the changes more pronounced, but even today, there really isn’t much of a limit on how far you can go.

I think the freedom for people to look however they want would make society all the more interesting.

As far as only people of a certain monetary means being able to afford cosmetic gene editing goes, I like author of Rich Dad Poor Dad Robert Kiyosaki's response to affording things you want:

Don't say, "I can't afford it." Instead, challenge yourself and ask "how can I afford it?"

It’s going to happen, whether we want it to or not

Even Jennifer Doudna, the scientist who discovered CRISPR-Cas9, says in her book A Crack in Creation that human genome editing will happen whether we’re ready for it or not.

There is demand, and in a capitalist society, where there’s demand, there will be supply. If regulations thwart it for a while in the U.S., the rest of the world will beat us to it.

China genetically engineered human embryos in 2015 using CRISPR and Nature rejected the story, largely due to ethics. Two years later, and the U.S. was genetically engineering their own first embryos.

Obviously that ethical resistance didn’t last long…

A straightforward Wall Street Journal article titled China, Unhampered by Rules, Races Ahead in Gene-Editing Trials, discusses how much faster the country is moving towards leveraging CRISPR-Cas9 to improve human health than the U.S. They’re conducting nine human trials with the technology to treat cancer, while the U.S. is still gearing up for their first.

In the article, Dr. Wu, oncologist and president of Hangzhou Cancer Hospital, is quoted saying, “China shouldn’t have been the first one to do it, but there are fewer restrictions.”

It's unethical not to use the tools we have to alleviate suffering

After reading about the types of patients they’re conducting the trials on, very ill individuals with cancer, I'm glad they are charging ahead to try and alleviate their suffering and give them hope.

I honestly hate thinking of others being ill, frail, and in physical pain as it makes me feel so terrible for them.

That’s not to say America is too far behind, though. Our own medical innovation is just laden with many more regulations.

In August 2018, Cambridge biotech CRISPR Therapeutics and Boston-based Vertex Pharmaceuticals launched the first company-sponsored study of a gene editing drug in humans in Germany.

In October 2018, Editas and Vertex filed an Investigational New Drug (IND) application with the U.S. Food and Drug Administration (FDA) to conduct a study using their EDIT-101 for treatment of Leber Congenital Amaurosis type 10 (LCA10).

Potential for a healthier future

Gene editing debates about “should” or “shouldn’t” aside, the reality is that now that this technology has been discovered, it cannot be unseen or forgotten and there’s no going back.

It is my hope that healthcare can become more open source. Part of CRISPR-Cas9’s extreme allure is its affordability and ease of use.

Perhaps this will break down some barriers and allow more researchers to access it, contributing more innovation to further improving people’s quality of life.