Monday, May 16, 2016

Private Discussion on a Synthetic Human Genome Raises Ethical Concerns

Last Tuesday, a group of 150 scientists, lawyers, and entrepreneurs met in private at Harvard University to discuss plans for a synthetic human genome. The discussion was directed at achieving the goal of "[synthesizing] a complete human genome in a cell line within a period of 10 years" (1).

The meeting was kept closed to the media and the public, as indicated by internal communications. This move was criticized by members of the synthetic biology community, who argued that the organizers were privatizing an issue with moral implications for all of society (1, 2). These critics pointed out that building a human genome from scratch not only involves science and technology, but also ethics. For instance, if such technology were available, who would have the right to use it, and in what circumstances?

DNA Sequence. Source: Harvard Medical School

The organizers of the event later stated that the meeting was originally intended to be open. However, an article that was submitted by the primary researchers on the subject-matter was yet unpublished, so the organizers did not want to publicize any unofficial claims (3).

Though the details of the meeting are still being with-held, the event itself does bring up many interesting questions. Human experimentation is one area of science that has been heavily regulated by the United States government. However, research into human genetics has generally escaped such regulation due to the cutting-edge nature of its research. As human genetic research continues to progress and gene editing and synthesizing become cheaper and widely accessible, should the government establish firmer regulation on human genome research? Which part of the bureaucracy would have the technical knowledge and ethical authority to make such regulation? And as scientific research is inherently a global endeavor, how can policy be applied internationally?

Sources:
(1) Cosmos Magazine
(2) Center for Genetics and Society
(3) Washington Post
(4) New York Times
(5) Gizmodo

9 comments:

Jeffrey Song said...

This is an extremely interesting topic, and one that I can see becoming only more controversial and visible to the public as time goes on and more discoveries/breakthroughs are made in the field.

Genetic engineering isn't a new technological endeavor and already affects many of us in most day-to-day aspects of our lives. GMOs, genetically modified organisms, in particular, have been around for decades and has been under fire from opposition for just as long. Though there's never been conclusive research supporting concrete harmful effects of GMOs, the acute public awareness and controversy on the subject has led to increased regulation to ensure that the products sold to consumers truly are safe and to hold massive corporate entities like Monsanto accountable if they do lapse in QA and consumer safety assurances.

In the same way, though the general public has next to no knowledge of human genetic engineering, I think that raising awareness and discussing the merits of both sides of the argument are a must as a first step in securing future regulation and tight monitoring of the industry by the government and by independent research groups. Establishing an international policy for a topic as broad and unknown as this would be difficult and would again trace itself back to whether or not this issue commands enough attention and controversy from the public to have multiple countries working together to establish an international standard. As for a federal agency to overlook and regulate this industry, I feel like the FDA, which already regulates GMOs, would probably be the best current fit, although altogether creating a new federal agency isn't a bad idea as well as the future of this field is potentially limitless and will almost certainly have drastic and far-reaching consequences for the future generations to come.

https://www.geneticliteracyproject.org/2015/01/06/scientists-urge-revamped-regulations-for-genetic-engineering/
http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm048106.htm#GeneticEngineering

If people are interested, here's a good article/essay online from a developmental biologist named Scott F. Gilbert in which he goes over a history of genetic engineering and addresses various arguments regarding the field.
http://10e.devbio.com/article.php?id=172


Ryan Swan said...

I would think it's appropriate for the government to place more restricting regulations on human experimenting. Right? Considering that this is stated, "gene editing and synthesizing [are becoming] cheaper and widely accessible" it would seem necessary for more regulation implemented upon human experimentation. As for who would be in charge of implementing these regulations, I would think it most logical for the bureaucratic agencies which handle scientific research related to genomes along with foreign policy agencies. If policy were to be applied internationally, treaties or documented agreements are always an ideal way to get other countries to abide by your own desires related to said topic.

ETHAN CHAO said...

Now, when you see the title "Synthetic genome," it sounds like they'll build a whole human genome from scratch. As close as the scientists think they are to it, it's highly unlikely that this synthetic genome will produce an actual human. We still don't know what much of the human genome is, so what they're really talking about are new ways to SYNTHESIZE a genome, that is, to create new DNA strands from preexisting ones; editing, not creating from the ground up. This has enormous medical implementations by lowering chances of cancer or erasing genetic defects, but of course this must be highly regulated due to the modification of other factors not related to health, such as making the child taller, or have blue eyes, or even grows more blood vessels within muscles to increase endurance. These all tie to GATTACA, the dystopian where people are discriminated by how they're genetically modified, which is bad. Of course, at first, the FDA would regulate such matters, but this isn't a drug we're dealing with here, so the government may have to establish a new regulatory agency to deal with such matters. They must be able to ban non-medical related modification, and must have the power to enforce it. There may even have to be an international police force dedicated to enforcing genetic laws in the world. Enforcement is still tricky though, as biotech equipment becomes cheaper and easier to procure, so this probably has to be handled like drug enforcement too, as it is likely to become widespread.

Lea Tan said...

There are definitely a lot of ethical implications when talking about synthesizing human genomes. I can understand the appeal of wanting to potentially change the genomes of embryos with defects or mutations to prevent hardship later on in life, but many might think this is unethical because you are literally chemically changing someone's "real" life. In addition, if such synthesis becomes available to the general public, it will probably cost a lot, and that would cause a lot of controversy over the availability of technological and medical innovations to those who are not as wealthy. Human genome synthesis would also compete with artificial intelligence; when would it be better to have a synthesized human, and when would it be better to have a robot? Artificial intelligence brings up a lot less controversy over ethics, so maybe that is a safer route to travel than human genome synthesis. However, AI can also be dangerous for other reasons. In general, technological innovations can be helpful but can also be dangerous, and they must be dealt with carefully.

Jessica Westmont said...

I agree with Lea. There is a lot of appeal to scientists to want to participate in human genome research, however it can become unethical very easily. It effects lives, and the nature of the research should probably be open to the public. The government should probably be regulating the experimentation involved with changing genomes. The science of this probably requires animal or human testing and the ethics of it should be watched. Even if this is really groundbreaking scientific work, it needs to be ethical groundbreaking scientific work.

Langston Swiecki said...

An important concept to keep in mind when talking about humans and the ethical implications of dealing with synthesis of human cells and potential genetic manipulation is that the more we try to find evidence that our version of consciousness is unique, the more we are faced with the fact that our brain and neural networks are not all that different from those of other animals. We are not divine. We are no pinnacle, a substantial variation perhaps, but not so exalted. Human exceptionalism is challenged by the consideration that the basic blueprint for man can be synthesized, copied, or imitated in some way, as this strips the magical quality we assume man must have and forces us to reflect on our meaningless(in a mystical or divine sense) lives in a manner that many are not comfortable with. The same goes for the value placed on the uniqueness of self, which arises when discussing genetic manipulation. Say I have a potential self-aware "self," and then I change their genetic code, ridding it of genetic mutations that would have otherwise contributed to a malformed frontal lobe. Have I created a new "self," and by doing so, killed the old one? Maybe. But the former "self" was purely hypothetical and neither had any distinguishing features, but the life of the actualized self in the scenario where genetic manipulation occurred will be better off, more able to reason, and more competent overall. Ethical whining over human based biology regarding stem cell research has already stunted the field, and it would be a shame to see excessive governmental regulation limit the potential in this field, which will only get more interesting and cheap as technology develops and discoveries are made. Considering the vast medical power such developments could hold, restraints placed on its development by the government should only deal with exploitation and proof of legitimacy.

Danny Halawi said...

In any scientific endeavor, I don't believe that our ethics should ever be compromised. The fact of the matter is yes, like Langston mentioned, there could be a vast amount of findings that unearth from the synthetic human genome research; however, just because we can uncover new knowledge does that mean we should compromise our morals? Some people might say yes, and in that case, scientists should be allowed to continue with these studies, but in a regulated way. The reason why I believe it should be regulated is because, if we just give these scientists unlimited freedom, then they might just go out and do something that might greatly disturb the general public and then the government will look foolish for not overseeing their work. Consequently, the government should give them freedom with their work, but they should do it in a way where they are checking the researchers to make sure that they're never going out of line.

TJ Bonbright said...

Synthetic human genome research truly is a fascinating subject that opens the doors for so many new possibilities. We have a way to improve humanity as a whole by making great strides to reduce, if not eliminate, certain diseases and ailments such as cancer and birth defects. No doubt this would be widely accepted, for so many people have been affected by these diseases, and a world without such danger is a brighter one. However, as this field is in general fairly new, there are many unknowns. One of the most widely discussed is the issue of ethics and potential regulation. Everyone has heard the stories of dystopian futures such as that of GATTACA, and that surely scares many people, especially since all this research is so new. However, I feel that the potential benefits far outweigh the dangers. Polling the oncology wing of a hospital would of course yield biased results, but it is important to consider how many people would benefit from the elimination of cancer and genetic disorders. But in reality, this research will not go unregulated. Should it come to that, then it would probably be best for a new agency to be formed to oversee the research, for most existing agencies would not be well-equipped or knowledgeable enough to bea ble to make well-informed decisions regarding synthesizing the human genome.

Dhruv Rohatgi said...

I think that a synthetic human genome is a very important topic that we would need to address and not have secret talks about. What these 150 scientists decide to do could affect everyone. One major talking point about GMO's are that they invade more natural species and take away from biodiversity. So in all honesty, I do not think its the decision of 150 people to decide whether a synthetic human genome or not. I do think it would be something we could do and it would actually be pretty cool but just because we can do it does not mean we should do it. I think that the human imprint although beneficial to us can be very harmful to the world we live in and that any developments that are made to this human genome is tested for its effects. We tend to rush a lot of technological advances and do not consider the consequences.