Governing The Future
Citlali Mosqueda
Governing the Future
If you were able to guarantee that your children would be born one hundred percent healthy, would you? I know I would do anything to ensure my kids don’t inherit the heart disease gene that was passed onto me. Scientists in Portland Oregon have finally figured out a way to make this fantasy into a reality. They first take sperm from a donor and mix it with “a microscopic gene-editing tool — a combination of chemical sequences known as CRISPR — that can make very precise changes in DNA.” (Rob Stein, NPR.org) Next, they inject the sperm combination into a human embryo. The CRISPR tool can then zero in on a specific part of the DNA sequence, for example a mutation, and then literally cut it out. Sounds futuristic right, except it is our current reality. It had been agreed upon by the United Nations Educational, Scientific, and Cultural Organization back in 2015 that the new technology should only be used for preventative, diagnostic, or therapeutic reasons. It was understood in the scientific community that it was dangerous to tamper with the human germline as it could be altered for future generations. However, a rogue Chinese scientist named He Jiankui, has implanted a gene edited human embryo inside a woman’s womb and delivered twin girls whose genes were modified. With this one rogue scientist I can’t help but fear that without strict regulations others will follow in his footsteps. Nations around the world need to attempt to mirror the system in the United States as it had the most developed system in the world. The United States needs to further expand regulations to protect minority communities from the unethical uses of embryo gene modification.
The procedure of gene editing babies could not be possible without the discovery of CRISPR’s by Francisco Mojica, a scientist in Spain. CRISPR is an acronym for Clustered Regularly Interspaced Short Palindromic Repeats and for all the non-scientists reading this, it basically means a bacterial defense system. These bacterial defense systems, CRISPR’s, are remnants from past invaders in the genetic code called bacteriophage. “The system serves as a genetic memory that helps the cell detect and destroy invaders.” (Broad Institute, Broadinstitue.org). After this break through discovery scientists from around the world published findings, animal trials, and more recently human embryo modification trials that were not carried to birth. All the scientific development after the invention of the CRISPR tool had overwhelmed the world with exciting, concerning, and unanswered questions. Will we be able to eradicate hereditary diseases such as breast cancer, huntingtons disease, cystic fibrosis, and some forms of Alzheimers with CRISPR? Are we going to alter future generations that will come after us in the process? Will this technology open up the door to this idea of designer babies for the rich? Too many questions were arising and in response some countries even wrote regulations outlawing the use of CRISPR on human embryos as they believed we weren’t ready to cross this line. It wasn’t until Novemember 2018 that the world had to face all these tough questions once again as it was the new reality. Scientist He Jiankui decided to implant seven women with a gene edited embryo in China. He Jiankui was the first to cross this uncrossable line with the inception of gene edited embryos and two genetically modified human babies.
Scientist Jiankui’s work has forced the debate around the use of human embryo gene modification to quickly figure out a common ground to safely ensure the inevitable development of this technology/procedure. Jiankui claimed that he edited the babies in order to prevent them from contracting HIV. After examination of his claim by other scientists, such as American Nobel Prize-winning biologist David Baltimore, the reaction was almost all frustration and shock. Baltimore said that it was agreed upon not to cross this line until more research was done to make sure it was safe and necessary. He went on to explain, that he personally thought it was medically unnecessary for Jiankui to even conduct this experiment because the chances of the babies contracting HIV were already slim (Baltimore, NPR.org). Now personally, starting this research I agreed with most of Baltimore’s standpoint but after further exploration I changed my mind about what regulation should look like. At the 2nd International Summit on Human Genome Editing in Hong Kong, Harvard medical school dean George Daley said that Juikui’s misstep shouldn’t stop the development and research into gene editing. Daley goes on to explain that we must eradicate these incurable diseases so more people have a chance at a happy healthy life. After reading what George said that is when I realized we can not ban the idea of potentially life changing medical advancement because one guy jumped the gun. I can’t help but think of countless loved ones that could have lived a longer happier life if they had access to this technology. We as a nation need to continue the safe development of gene editing by continuing to set an example for nations around the globe. This would allow our country to continue to make safe advancements that will change the face of medicine for the better.
The United States already has a small regulation system in place to ensure two things, the safe development and the safe market use of gene editing. The first major regulation on the books is the federal law that states regulation will occur at in laboratory research, preclinical testing, human clinical trials, approval for medical therapy uses, and finally postapproval surveillance. At all phases of research into gene editing scientists are subject to institutional biosafety committees. To a naked eye this seems like an efficient system however, this system is not designed to ensure the human germ line stays in tact and it is sure not designed to protect minority communities from possible targeting. The only government committee that regulates the safe development is only allowed to oversee safety concerns for the worker/subject and to oversee the process of consent obtaining human embryos from known donors. The committees do not oversee the safety of future generations and does not have the authority to stop research into unethical/non-medical uses of the procedure. If a scientist wants to create a tool that would ensure babies born with blue eyes that would be unethical however, with our current system if the laboratory treats its workers correctly, and obtains samples correctly it would be allowed to develop such technology. I want to be clear here so that you understand, as a nation we should allow the use of the technology because the benefits of eradicating disease are self explanatory but we should ban certain uses of it. This technology can easily be used for other unethical purposes. An example is this idea of creating a “better looking” child according to societal norms. If their were ethical committees put into place, they would be able to see the danger of allowing the use of the technology for such purposes. For example sperm banks no longer accept donations from males with red hair because women just dont want babies with red hair. If someone had the means they could pay to ensure their baby would not be born with red hair, or a big build, or brown eyes etc. As we have seen with the LGBTQ community, anything outside of current society norms will be attacked. This technology could be another tool to hurt specific targeted communities. Another example of this would be within the down syndrome community. Representatives from the community have voiced their concerns to Congress about the development of gene editing. They fear that with this option families will cut out the extra chromosome before inception and in coming years people with down syndrome will cease to exist. Frank explained that to Congress begging for some oversight from the government to ensure people like him aren’t erased just because they aren’t full able bodied. Keeping Frank in mind, we must advocate for an expansion of our current gene editing regulations to combat unethical uses while simultaneously advancing medicine.
Today, huge developments have been made in the gene editing research and they shouldn’t be banned on the basis of religion, societal norms, or even the fear of a new tool to be used for targeting communities. Scientists in both Oregon and New York are currently using CRISPR to study its effects in day old embryos. Shoukhrat Mitalipov leads the lab at Oregon Health & Science University that is using CRISPR to cut out a fatal heart mutation from an embryos DNA. He is still in the beginning stages and needs other scientists to test his work but I would argue that Mitalipov’s work is extremely important. He is taking eggs, sperm, and CRISPR to try to eradicate diseases that have affected millions of people across the globe. He says that if he can perfect his procedure it can be used on other mutations such as breast cancer, huntington’s disease, cystic fibrosis, and some forms of Alzheimer’s. Little kids would no longer be taken too young because of a life threatening illness. People could live longer without a lingering fear of a fatal heart condition. However, even with the amazing benefits this kind of work could have on human life critics warn that this procedure is unethical because scientists would essentially be playing god. This weak argument was also presented against IVF before it became such a common procedure. Using IVF as an example, a new IVF procedure was founded in New Jersey to help women who were having trouble conceiving. Fertility doctors in New Jersey were able to rejuvenate a sterile egg by implanting it into a young fertile egg. The procedure worked well and women were getting pregnant. (Carl Zimmer, New York Times “The Ethics of Genetically Editing Babies podcast). However, after the public caught onto this procedure they realized it was outside of our social norms and people became concerned with this idea of a baby being born from three parents. In reaction to the concern the FDA stepped in and heavily regulated its practice to the point where everyone dropped it for awhile. Religious groups such as Christians and Catholics were hung up on this idea of taking god out of the equation when it comes to procreation because they believe it is supposed to be between one man and one woman. However, these are religiously bias concerns that almost ruined a key medical advancement. The United States is not suppose to create regulation based on religion. This IVF procedure is now a common procedure many women in the United States undergo. It is now considered a huge advancement in the medical world but it was almost tanked by a religious argument. So many positive advancements can come of gene editing if it developed properly for ethical reasons.
The United States needs to continue taking the lead with human embryo gene modification by expanding regulation to include coverage of unethical uses of this new science. Transparent research, scientific community approval, and government review/regulation of the use of gene editing needs to be put in place to save lives. Scientist He Jiankui has already taken advantage of self-regulation in the scientific community and has crossed the uncrossable line in a dangerous way putting lives at risk. Self-regulation is a failure and two babies have to live with the possible consequences of it. Governments around the world need to step up and regulate the development of this technology. The United States Congress needs to introduce legislation to regulate the future before it is too late to fix the consequences. Government is slow but a way to speed things up is by starting in your own state. Call your local senators and district representatives to let them know that you don’t want communities to be targeted and that congress should be stepping in the ensure it doesn’t happen. The future is bright let’s keep it shining by doing our part to save our germline and targeted communities.
Works Cited
Hamlin, Ted. “Frank Stephens: ‘I Am A Man With Down Syndrome And My Life Is Worth Living.’” RealClearPolitics, Real Clear Politics, www.realclearpolitics.com/video/2017/10/31/frank_stephens_i_am_a_man_with_down_syndrome_and_my_life_is_worth_living.html.
National Academies of Sciences, Engineering, and Medicine; National Academy of Medicine; National Academy of Sciences; Committee on Human Gene Editing: Scientific, Medical, and Ethical Considerations. Human Genome Editing: Science, Ethics, and Governance. Washington (DC): National Academies Press (US); 2017 Feb 14. 2, Oversight of Human Genome Editing and Overarching Principles for Governance. Available from: https://www.ncbi.nlm.nih.gov/books/NBK447266/
Stein, Rob. “Exclusive: Inside The Lab Where Scientists Are Editing DNA In Human Embryos.” NPR, NPR, 18 Aug. 2017, www.npr.org/sections/health-shots/2017/08/18/543769759/a-first-look-inside-the-lab-where-scientists-are-editing-dna-in-human-embryos.
Stein, Rob. “Facing Backlash, Chinese Scientist Defends Gene-Editing Research on Babies”. NPR, https://www.npr.org/sections/health-shots/2018/11/28/671375070/facing-backlash-chinese-scientist-defends-gene-editing-research-on-babies
“The Ethics of Genetically Editing Babies.” The New York Times, The Daily, https://www.nytimes.com/2018/12/19/podcasts/the-daily/crispr-gene-editing-babies.html
Waldman, Paul. “In Praise of Designer Babies.” The American Prospect, The American Prospect, prospect.org/article/praise-designer-babies.
Zhang, Feng. “Questions and Answers About CRISPR”. Broad Institute, www.broadinstitute.org/what-broad/areas-focus/project-spotlight/questions-and-answers-about-crispr
