Introduction
The world of the scientific community came to a standstill when it was announced that they had found a new technology called CRISPR. This is a technology that can be used to edit genes. The essence of CRISPR is simple: it’s a way of finding a specific bit of DNA inside a cell. After that, the next step in CRISPR gene editing is usually to alter that piece of DNA. Also, CRISPR has also been adapted to do other things too, such as turning genes on or off without altering their sequence.
According to the WHO Director-General, Human genome editing has the potential to advance our ability to treat and cure disease, but the full impact will only be realized if we deploy it for the benefit of all people, instead of fuelling more health inequity between and within countries. This new medical treatment promises to be a faster and accurate way to determine the diagnosis of incurable, rare and genetic diseases. It also promises to promote targeted treatment for persons whose genes carry the traits of specific diseases by changing parts of the parts of a cell DNA or genetic makeup that has the problem. This can also be a preventive measure for the inherited genetic disorders which could be transferred through hereditary.
However, according to some experts this technology is controversial because of its possibility in making permanent changes to the genetic make-up in the human cell. It is important to point out that there are broadly two types of gene editing which are: somatic and germline editing. Recently, in an article in the Financial Times, Dr. Ahujah described the somatic gene editing as an editing that involves applying the technology to a subset of a patient’s non-reproductive cells, for example blood cells.
Health Equality and Access
In the first week of March this year, two conferences on germline editing took place in London, United Kingdom. They covered issues on heritable and somatic genome editing, stem cells research, and equality. However, my interest is to explore the danger posed by the problem of Equality in healthcare. Generally, the inequality pervades every aspect of our society and has global dimension which is expressed in the efforts by the United Nations to achieve the Sustainable Development Goals (SDGs) by 2030. The SDG 3 which is to ensure healthy lives and promote well-being for all at all ages clearly captures the boundaries and sets the foundation upon which in lay my argument on Health Equality. We should begin to reflect on the ethical questions that equality raises over this new technology and to draw our minds to the issues humanity still grapple with because of our inability and refusal to learn from and implement the solutions to our problems. The unequal access, economic disparities, high cost of living and healthcare, healthcare disparities, conflicts, etc facing us as a people are reflections of the failure of our systems. Our inabilities to solve basic problems like hunger, clean water, sanitation, diseases cholera, poverty, climate change, etc could be attributed to the economic structures we have been operating over the years. Globally, the inability of capitalist systems to address the widening socio-economic gaps which was the basis for the appeal to systems like communism which sought to take over the means of production from a “select few”, has led to the inability of many persons to engage productively with health systems.
The inequality in global health systems is very problematic. The widening gap of access to quality healthcare is also a rising trend in the Ghanaian health system. As a health professional dealing directly with clients/patients and relatives, health managers and policymakers concerning health resource management and allocations, I have been reflecting on all these issues for some time now. Patients in Africa, Asia, South America, Middle East and even Europe face same problems. It is about your economic status, your class and what you are worth. If this is the case in Europe as this conference has revealed, how much more people in lower- and middle-income countries? Where according to the World bank as of 2020 report, In the worst-off regions, particularly in Sub-Saharan Africa, the rate is higher than 80,000 DALYs per 100,000. DALY means Disability Adjusted live Years.
If one is to go into the details of this report looking at the disease burden by cause, one would see how heart-breaking the situation is for Sub-Saharan Africa. Sickle cell disease carries approximately 80% of the global disease burden according to WHO. This is a condition predominantly among people of African descent. Same can be said of Malaria and other diseases endemic in other regions of the world. Therefore, if people have limited access to current treatments that could save lives and eradicate some of these diseases, how much will sickle cell patients in Ghana and Africa fair when it comes to gene editing therapies? In the past, people living with HIV AIDS could have benefitted from having access to new and improve treatments regimen but for the cost of these new HIV therapies. What will be the fate of people within the low socio-economic bracket who cannot access quality healthcare already when they could benefit from somatic or heritable germline editing?
Lessons from the past (Once biting, twice shy)
According to the WHO, the 1990s saw a substantial increase in the number of people infected with HIV and dying of AIDS. Between 1996 and 2001 more than 3 million people were infected with HIV every year. Since then, the number of new infections began to decline and in 2019 it was reduced to below 2 million. The lowest number of new infections since 1990. Even though we have made great strides in increasing access to life saving HIV medicines, many people with HIV and AIDS globally cannot afford the new and better treatments. In retrospect, many lives that were lost could have been saved. As history repeats itself, many are of the view that our society fails to learn from her past actions and inactions. We risk falling into the same quagmire of limited access and increased cost of medical treatment locally and globally. Hence, this caution must be made to every person, scientific and business communities about the possibility of history repeating itself with this new medical breakthrough.
Ethical and Philosophical Reflection
To the biotechnological and Pharmaceutical Industries, is it not unethical to allow harm to befall other persons all because we must cover the cost of Research and Development when we know that the genesis of most of these scientific breakthroughs were without cost? Where is the justice in making other people suffer? How do we level the playing field for everyone? In one of the presentations at the conference in London, I asked would it not be right for our societies globally to practice the philosophical values like solidarity just as medieval cultures like the people of Kemet (Egypt) practiced? Despite the hierarchies, they still recognised the different capabilities in each person and how it all comes together to build an equally beneficial society.
Ethics and Law
Furthermore, what ethical and legal framework or laws should regulate and guide the use of this new medical technology. This is on the backdrop of the revelation at the It was shocking to many in and outside of the scientific community when a Chinese scientist announced the gene editing of three embryos producing babies that may be resistant to HIV in 2018. The ethical problems of this research has raised questions such as whether or not the goal of the experiment was achieved, whether countries or an international body should take the lead in providing a legal framework that would guide all countries, will people not seek to edit their embryos to create “designer” babies especially with money and resources at their disposal, the commercialisation of germline editing like all other medical technologies and treatments in the past, etc. Should the scientist or the scientific community self-regulate?
Conclusion
We need to reflect on and ask ourselves about the values we hold as human species. What kind of society and world are we building for or envisage for ourselves? What are the ethical principles and value guiding our actions and inactions? The world we currently have is riddled with inequalities across all aspects. As one speaker pointed out the fact that as a people, we have not gotten rid of malaria and other diseases that are taking lives and deepening the inequalities across the world. While we are excited about germline or genome editing and promoting cutting edge and pioneering research, we must as a matter of urgency promote equality in Access and equitable distribution of healthcare technology and resources globally. We must advocate for an ethical and legal framework that prioritise the needs of all persons irrespective of their status or background. But I am not optimistic even in the global sense because as a human species, we have had the opportunities to consider modifying our current healthcare systems, but for the economic systems of many countries such changes would significantly affect the fortunes of the few beneficiaries which could translate into a transformed and sustainable healthcare delivery system evidenced by reduced cost, increased access, and quality to everyone. After all, many breakthroughs in medical science were achieved at little or no cost. An example is the immortal cells of Henrietta Lack called the “HeLa” cells which has advanced modern science. Every scientist wants to be the first to produce the next scientific breakthrough, this puts pressure on research financing hence the cost is passed to the consumer/ patient whether there is a breakthrough or not. Somatic and Heritable Genome editing will not be different from all other scientific treatments when it comes to equality access for all.
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Richard Buabeng is a Bioethics and Medical Law candidate at St Mary’s University, Twickenham, London, UK.
E: advocatebuabeng2020@gmail.com
IN: https://www.linkedin.com/in/richard-buabeng-234b3286/
