Ethics of Do-it-yourself Gene Editing: What is the ‘Right’ Question?

In most simplistic words, Gene editing refers to process by which genetically inherent traits (one that transfer from one generation to another generation) of an organism can be fiddled around using natural enzymes. The sophisticated scientific tools involved in gene editing were largely out of general public reach because of the specialised training involved. But with the advent of gene-editing tools like CRISPR which are faster, accurate, cheaper and most importantly ‘simpler’ in comparison to their precursors, the engineering human race is no longer a “by scientist-only” business. CRISPR, hailed as an incredible innovation in the biomedical research field, involves cutting a particular gene region using engineered enzymes as scissors and replace it with gene of choice, thereby, effectively working as biological ‘cut and paste’ tool. The technique holds promise in single-gene disorders like cystic fibrosis, hemophilia, Hunter’s syndrome and sickle cell disease as well as more complex diseases, such as cancer, heart disease, mental illness, and human immunodeficiency virus (HIV) infection.

Gene editing using CRISPR is like using cut and paste command.
Credit: Natural Society

Since the technique is relatively new it is uncertain what are the potential risks of unintended genetic mutations, what are their plausible consequences, and most importantly how much such unintended, probably rare, events will have implications on the future generations. Such questions can not be answered in such an early phase; remember the findings on CRISPR were published only in 2013.

Biohacker Dr Josiah Zayner who sales and promote do-it-yourself gene-editing tools.
Credit: Standford.edu

When a biohacker named Dr Josiah Zayner “became the first person known to have self-edited his own genes with CRISPR” on a Facebook Live using his own company’s “do-it-yourself” gene editing tools, it has inadvertently put CRISPR at the centre of debate on science and ethics. Because it has given rise to fear of people manipulating with genes to gain “super” powers or, worst, if given chance to modify their genes, people might opt for it without considering its long-term consequences as shown in the movie X-Men, a fantasy based movie highlighting how manipulating genes can transform the person. This further raises concern that such biological-technological integration if left unregulated in the hands of general public then clouds of uncertainty surrounds over the human society and its existence.

Unregulated gene editing can pose serious concerns including bioterrorism.
Credit: WCSU Science Communication Unit

This was serious because from the bioethical perspective he is promoting a culture of self experimentation that can have dire consequences because long-term effects or risks associated with such gene editing has not been established yet rigidly. Uncertainty over what could happen to a personal’s physical and mental well-being makes it a danger to try. Such demonstration creates more uncertainty for the international security agencies while dealing with bioterrorism as any person who tried do-it-yourself gene-editing for one particular reason might unintentionally become human bomb or bio-weapon, without his/her knowledge, that can trigger epidemic like situation across the world similar to Zika virus outbreak.

Credit: Imgur

It is uncertain as well that once we start tinkering with our genome, where will this stop? Although what Josiah tried falls under somatic therapy category and might not pass on to future generation but uncertainty clouds over who will stop anyone to not try it on reproductive cells too. One would argue storing reproductive cells needs state-of-art facilities which is only available with biologists and hence it is not as simple as injecting CRISPR into gonads. But in the lust of designer babies one can start bribing sperm banks or egg storage facility keepers to let them try CRISPR on their reproductive cells. These centres have storage facilities and mostly in developing countries they run an unregulated business too. If that happens, it is uncertain how our future world would like! Surely, one step (unethical one?) from Dr Josiah has led to so many uncertain futures scenarios.

Right of bodily integrity over society’s safety?
Credit: Kialo

Biohackers like Josiah usually give the argument that they have full right over their body. Human right of bodily integrity gives them this right but with rights comes duty too. As highlighted, these biohackers are putting themselves and the society at large at risk for safety. Anything that goes bad because of such untrained and reckless use without giving consideration for implications can impose strict restrictions on basic science or biomedical research too, as knee-jerk reaction by governments, effectively slowing down the prospects of preventing or curing diseases mentioned previously.

Whose side are you on?
Credit: Amazon

The author is of the opinion that unregulated self experimentation of gene-editing in present scenario should not be seen as a question of “right” of bodily integrity. But the “right” question to ask in present scenario is “Should wider public be made aware of pros and cons of such technologies, safety concerns, ethical aspects, issues of governance and equity?”

Do let us know in comments below, your perspective on following ethical questions these questions:

  1. Are such self-experimentations of in-vivo gene-editing tools ethical given their is too much uncertainty surrounding immune-response triggered by some off-target mutation?
  2. Should such self-experimentation of CRISPR through kits available in the open-market be regulated as a precautionary step?
  3. If such precautionary interventions are mulled over then isn’t it compromising basic human right of bodily integrity?
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