If our group has learned anything from these past few months of learning about field of gene therapy is that right now, no one truly has the answers to the ethical, societal and economic implications that this scientific cure could bring.
Taking a step back, we began our research at the start of it all. What is gene therapy? Through thorough research into this, we found that gene therapy is equal parts technology and medicine. Technologically, there are therapies ready to be put on the market to cure diseases such as blindness, Alzheimer’s, Parkinson’s and more but there is more to it than just technology, remember this is medicine. In the tech world, speed is everything. It is all about winning the race against smartphones, smart TV’s, AI, anything. In medicine, there is a time press that comes from the DOH in emergencies but most of the time, speedy remedies to disease put up red flags for those being treated later on. What gene therapy has done is take medicine from a personal relationship, to a big business, one that is on track to be bigger than the pharmaceutical sector. This big business is seen in one of our insights into the cost of gene therapy. The overall controversy of how one can afford to buy a gene therapy is due to the high costs that of the gene therapies that are on the market today such as the first FDA approved gene therapy Kymirah among others.
Such being the case, Dr. Mark McClellan, former FDA commissioner and current leader of the Duke-Margolis Center for Health Policy, concluded that the healthcare system is far behind the medical industry and the advances it has made so, being that patients, doctors and researchers, and insurance companies have mutually exclusive interests, it is impossible for everyone to win. The entire gene therapy field is now looking to monetize on their ability to cure what used to be deemed incurable diseases and this is where the ethics of it all come into play.
Journalist and historian, David Perry wrote, “the pro-information approach demands that everyone involved in genetic counseling have access to the best data and presents it in a value-neutral way.” In giving everyone equal access to gene therapy, this must include attainable price points, no discrimination and equal opportunity for everyone to take advantage of. The FDA is just no longer enough to control the medical and genetic communities. The ethical future of gene therapy is now beyond the typical, “this is wrong” and “this is right” because we have never had to deal with the controversial issues that we are dealing with now as a result of gene therapy. From “designer babies” to biological weapons, these are both things that health professionals and even legislators have yet to encounter scenarios such as these but because of this, getting out ahead of the possible negative implications of these two examples, is more important now than ever.
We are in a place where CRISPR can help farmers combat climate change by genetically altering their crops, incentivize football stadiums to start “DNA Days” and, lead to the insurance and pharmaceutical industries to be left in the hands of tech giants like Amazon, Apple and Google. As such, there needs to be some sort of precedent set so that none of these three scenarios gets any worse than they already have. With genetic testing companies like 23andMe and Ancestry becoming more familiar in the public eye, they are being sold to customers who have no idea that they are basically giving our their privacy rights to their own genetic information for results that are little to completely, inaccurate.
This is why education within this industry is more important now than ever. Without proper understanding, the Frightful Five, the FDA, the federal government could all have influence over every single person residing the in the United States because of those who feel it is important to send a swab of their DNA to a lab in order to see just what percentage English they really are. What people sending in their cheek swabs needs to know is that scientists are still working, to this day, trying to uncover the complex information of the millions of genes that reside in the human body. We simply do not know enough to give sufficient information to people who are just looking to see if they are carrying a genetic mutation. These 23andMe, Ancestry, and Helix tests cannot significantly provide lifesaving information and as a result, should be used with a grain of salt, or even less than that. It seems unlikely for anyone to give up the password to their email but when shipping their DNA to an unknown lab somewhere in the United States, people do not seem to show the same concern for their privacy. Thinking about the millions of people having their data breached across the country, by more companies than one, how can we be sure that this genetic information will not be next? Now even thinking ahead, the potentially 6 million more students studying harder, retaining more information, and ultimately becoming better learners because of gene therapy treatments will be ahead of the present generations. Taking it a step further, if this trend is multiplied across generations, eliminating prohibitive, cognitive disorders in students, it could reshape the entire education system with many subsequent disruptions.
With a Frightful Five company such as Amazon at the brink of breaking into the healthcare industry, it could mean positive things for gene therapy whether it investment in research, funding of drugs, therapies and clinical trials, these tech companies, although you do not want to trust with your health data, can contribute a lot to the gene therapy community. But, there needs to be a point at which the line is crossed and sure, donating genetic information for research is ethical and legal but when it is collected through your Google search history or updates on your Apple health app, there needs to be a call for change. In the end, with the Frightful Five having taken initiative within the healthcare industry to fund gene therapy programs and rebuild the healthcare system of the nation, they can push bounds in the battle for updated health services unlike anyone else can and this gap between the Frightful Five and everyone else is what needs to be addressed.
And to end on a global note, the future of gene therapy is the United States barely has a clear path ahead of it so thinking about how the rest of the world compares is a whole other thing on its own. Isolated countries such as North Korea, Russia and China make it difficult to know how exactly the countries have progressed in their biotechnological warfare, including gene therapy, and what the affects can be on the rest of the world when a country, although small compared to the US, can utilize science to become a super-powered population. It is to avoid scenarios such as the one posed by North Korea that the FDA was put in place. In order to ensure that the medicinal and agricultural sectors of the nation were being regulated and monitored, there needs to be an organization that oversees research that secure public health and safety. But, just having one country, out of hundreds with the capability to genetically alter genes and embryos with this agency in place, is not enough to guarantee that gene therapy will only be used for good.
There are a lot of things to ponder over here, but the best place to start is by educating yourself on the future that could be completely disrupted by this biotechnological innovation and then looking for ways to protect your genetic and health information, so if that means resisting buying genetic testing kits, not updating your Apple health data, or any of the other numerous ways to protect yourself, that at least is a good place to start.