Examining the outcomes and implications of genetic research – gene editing
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The topic of genetic research is a fantastic opportunity to discuss ethics in Psychology in a slightly different way to what is most common during the IB. Most often, you will consider the ethical considerations made by researchers in the process of conducting their research. How do they protect the participants, how do they keep data confidential, is there deception involved?
This Pamoja Teacher Article will examine ethics at the point of application to the real world, specifically, what are the ethical implications of gene editing? This article is based upon the concerns raised in an article in the Harvard Gazette ‘Perspectives on Gene Editing’.
The Technology
4 years ago this month, on November 25th 2018, He Jiankui, a Chinese geneticist, announced on his personal YouTube channel that the world's first ever gene edited babies had been born, twins: Lulu and Nana. He, and his team, had used CrispR-Cas9 gene editing technology to target the gene associated with HIV-positive. They did so without communicating their research with the wider scientific community and the announcement was made before peer review of the research had taken place. This prompted widespread condemnation and scrutiny from the scientific community and increased public, and scientific, discussion about the outcomes and implications of gene editing.
Crispr-Cas9 – the technology that makes gene editing possible. The Cas9 protein locates and cuts specific locations in the DNA. The DNA then repairs itself with minor changes.
First, we should understand the distinction between the two types of gene editing: germline vs somatic gene editing. Germline editing, as used by He, is carried out early in development and influences the entire organism; all of the cells, the sperm, the eggs and consequently future generations of the individual who had their DNA edited. This type of gene editing prompts huge ethical questions surrounding exactly how future generations will be affected, whether it is safe and whether consent on the part of the original edited individual carries over to subsequent generations.
Somatic gene editing on the other hand, target only specific cells and the influence of the editing only affects the patient undergoing treatment.
With the advent of such a powerful new technology, scientists are now asking: what are the implications? How should it be used responsibly? What are the benefits? And how should it be regulated and by whom?
Safety
One of the main possible benefits of gene editing and Crispr-Cas9 technology is treating previously incurable genetic diseases. However, what is still unknown are the future effects of editing genes and the impact on future generations. Asides from this, what are known as ‘off-target effects’ might also be unsafe. Off-target effects are when the Crispr-Cas9 effects DNA that was not targeted or intended to be edited.
Access
The Belmont Report (1979) outlined the principle of justice in research, that is, that the benefits and risks of research should be fairly distributed. With relation to gene editing this raises the question of who will be able to access the technology? If the cost is high, it could unfairly benefit the health of those who can afford it.
Enhancement
Is it ethical to use Crispr-Cas9 to enhance individuals IQ? To choose the eye colour or hair colour of babies? Most in the scientific community agree that it should only be used to cure or prevent disease but this is an area that is difficult to draw a definitive line. In addition, there is the ethical and moral question of whether it is ‘right’ to interfere in the natural inheritance of genes.
Regulation
Questions of enhancement and exactly how the technology should and could be used raises the question of how it should be regulated. It is a technology that is possibly open to abuse and misuse by individuals, states and organisations. One suggestion might be to regulate with an independent, international body of members of the scientific community.
Participation
It is important that citizens are involved in the choice over whether and how gene editing is used. Germline gene editing alters our shared environment so it is not only the individual being treated and their future generations that are effected, but also those of other potentially non-consenting individuals who might reproduce with them who are subject to the implications of gene editing too.
Conflicts of Interest
How will gene editing technology be owned, monetised and marketed? There might be some benefit in commercial use in terms of increasing funding, however, this also raises ethical issues. Will the technology be used by companies with a specific interest in making profit? How will this affect the technology and its future use?
Societal Risk
Finally, the potential risk to society draws together a variety of the ethical concerns above. If the technology is only accessible to the wealthy it could create further societal inequalities if it is used to make enhancements to traits such as intelligence. What about the use of the technology in developing and developed nations? How do we ensure this is fair and further wealth gaps do not open up between the so called ‘global north and south’? On top of this, how might the advancements undermine institutions such as the family? We don’t exactly know what it means to be a designer baby, but if it becomes common place there may well be stigma placed on individuals who haven’t been genetically ‘designed’.
Mary Todd Bergman, 2019
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