Can you imagine a world without genetic disorders and disabilities? The fact is that we are not far away from that possibility. The rapidly developing science of biogenetics will provide the ability to not only predict and prevent, but also correct genetic mistakes. CRISPR Cas-9 technology is a genetic engineering technique of cutting and splicing the genetic code of any living thing, including human beings to eliminate and add certain traits to their DNA. It sounds like science fiction, but it is a reality that is already happening in labs today.
Scientific advances often create ethical dilemmas. As the parents of a child with a severely disabling genetic disorder, I have a personal interest in the ethics of genetic engineering. I believe we should all be thinking about the possibility that genetic conditions could be corrected and asking ourselves if we would want to do that. For some parents, it’s an easy answer. They automatically say they would or would not want to change their child. Our religious and philosophical beliefs will often guide our first reaction. But we might not be so confident if given the actual opportunity.
Although it was considered unethical and he was punished for it, a Chinese scientist used gene-editing technology to alter the DNA of twin embryos. Biophysicist He Jiankui was able to disable a gene that allows HIV to infect cells. His illegal research caused a huge uproar among scientists because of the unknown risks to future generations caused by altering embryos. Many criticized him for what he did, but a minority of scientists believe that his research should be continued and that, thanks to him, progress could be made in human genome editing.
As customized gene-editing becomes a reality, more questions are being asked. The CDC says it is safe to genetically-modify organisms such as mosquitoes to help prevent disease outbreaks, but some argue that there is a risk of creating unintended ecological consequences that could affect the entire world.
The social implications, ethics, and possibilities of using advances like CRISPR must be considered, such as:
- Should human embryos be genetically modified to create designer babies?
- What would be the long term effects in future generations of doing so?
- Does altering genes imply that people with genetic disorders are not good enough?
- Should neuro-atypical people be considered to have genetic disorders?
- Should scientists meddle in the human genome?
- Is humanity at risk of being changed forever?
- Does perfecting the body alter the soul?
- Where is God in this genetically-engineered future?
- Will people with genetic disorders be put into a lower class of humanity?
- Who will determine who gets these expensive interventions?
- Are genetically-engineered plants and foods safe in the long-term?
CRISPR is not the only controversial medical advancement. For example, some people consider it wrong to use cochlear implants to enable deaf people to hear. And technology such as eye-gaze controlled devices and other assistive technology are not always equally available because they are expensive. Developing mRNA medicines and technology requires billions in investment as we have seen with the Covid vaccines. Who will write the policies that determine where the money comes from, who gets the profits, and who owns the patents?
New technology has greatly increased the lifespan and cost of healthcare for people with disabilities, including our children. Parents think that is a wonderful development, but there are others who say that their care is too expensive and imperfect babies should not be carried to term. The question of whether prenatal tests that predict genetic disorders should be used as a basis for abortion has been around for quite awhile. If we say yes, then are we saying that people with genetic disorders should not be allowed to live?
The ultimate question of who decides who gets treatment is critical because eventually this rule could be applied to living children and adults who are ‘high-utilizers of healthcare’ and tax dollar-funded programs. This question is going to be important to decision-makers as healthcare funding changes, the population grows, and the global economy adjusts to the net zero agenda.
Medical technology is advancing faster than the ethical understanding of using that technology. The results of changes in the human genome could be wonderful or catastrophic. We need to carefully consider the risks and use wisdom to determine how we move forward. Just because something is possible doesn’t mean it’s a good idea. But once the possibility exists, it can be hard to stop it from being used. Our generation will be the one who votes for the policy-makers that determine the answers to these and other ethical questions about science and human life. We must be part of the discussion.
Information about the beginnings of the biotech business and the patenting of live genetically-modified organisms and seeds. https://www.corbettreport.com/episode-025-shut-up-and-eat-your-gmos/