Response to “Rogue Human Experimentation”

The reason I was inspired to create my civic issue blog on the topic of human genetic engineering was because of the news of the Chinese scientist altering DNA in two embryos that were born. My first blog post was actually on this topic and now I am looking at revisiting the topic to see how the world has responded to the Chinese scientist He Jiankui and the babies who have the altered genes.

Jiankui claims to have conducted the genetic modification solely to prevent the twins from developing HIV because their father is HIV positive. This seems like it would be an honorable cause and a sufficient reason to edit their genes, but the majority of the world and scientific community was not pleased with Jiankui going rogue and editing the genes in these kids. The main reason why people were displeased with him is because there are already established and safe ways to prevent parents from passing HIV on to their children, but Jiankui decided to do something risky and possibly dangerous instead. One possible issue is that while the gene that was removed from the twins will prevent them form getting HIV, it also will make them more susceptible to the West Nile Virus, it is really too early to tell how things will turn out though.

In response to Jiankui’s personal experiments on real human life and also in response to the international backlash, China has tightened their rules about gene editing. The new changes state that a scientist would need to get national approval for any gene editing or high-risk biomedical technologies research. This seems like a bit of a knee-jerk reaction though. At first, it may seem like a reasonable step to take, but scientists are concerned that it will hurt research as a whole. It will greatly increase the amount of time it takes to get research done and will hurt less controversial topics of research like blood cell editing. China could be potentially creating a bottleneck for its scientists in biomedical fields. But, one thing is certain, these regulations should prevent any new rogue research or experiments on humans in China now that there are clear rules for it.

That response from China though was not even the most extreme. Scientists and ethicists from seven different nations have called for a moratorium on gene editing experiments. To me this makes very little sense because the only person to mess up was He Jiankui, why would his carelessness need to force other researchers to stop their perfectly ethical and legal work in the same field. But, I also am not an expert in human gene editing, so maybe my opinion sucks. Two of the scientists who called for the moratorium were the primary inventors of the CRISPR technology. I have talked about CRISPR in earlier posts—if you are unfamiliar with CRISPR, it is the technology that allows us to edit human genes.

Also, in a separate statement, Francis Collins the director of the National Institute of Health (NIH) said he personally, and the U.S. government both fully supported the moratorium. Collins said,

“What we’re talking about here is one of the most fundamental moments of decision about the application of science to something of enormous societal consequence. Are we going to cross the line toward redesigning ourselves?”

And I think he does have a point. In a later explanation those who proposed the idea explained that the moratorium would actually not cover laboratory research not intended to result in a birth or gene editing. The main goal of the prohibition is to prevent any more editing in genes that can be passed on to the next generation because most scientists agree that gene editing has not been perfected enough to let this happen.

The proposal also does not want to stop gene editing forever, it is only a temporary stop, one with no clear ending date. The idea is that this would give organizations like the NIH and World Health Organization (WHO) sufficient time to create framework to govern and set precedent in regards to future human genetic modification research and experiments.

In general researchers in the field of gene editing recognize both the amazing positive effects of gene editing, but they are not ignorant to all of the possible negative outcomes and that is what the moratorium is about. By giving the world time to setup rules and regulations for this quickly spreading trend we can hopefully limit the bad outcomes that could result from genetic modification. Nobody is hoping that this results in designer babies and for now at least, scientists are doing their best to keep gene editing strictly in the medical field.

Genetic Modification and Allergies

This week I decided to go slightly off topic because of some very recent events that have occurred in my life. As I am writing this blog I am actually sitting in the hospital because of an allergic reaction I just had (and no I’m not making this up, and I did write about a trip to the hospital that happened earlier this year for the same reason in my passion blog, but it did happen again.), so it occurred to me, why not see if there is any connection to genetic modification and allergies. Lo and behold there does seem to be an interesting link between the two.

The connection may not be what you are thinking though. According to The American College of Allergy, Asthma and Immunology, there are at least eight current studies proving that genetically modified foods actually are hypoallergenic when compared to their natural counterparts. Also, according to this source, “the committee did not find a relationship between consumption of GE(genetically engineered) foods and the increase in prevalence of food allergies.” Based on these studies there only seems to be evidence in favor of GMOs as food that can actually be hypoallergenic.

However, to attempt to be as thorough as possible, there were studies done with the assumption that genetically engineered foods were worse and more allergenic than the “normal” option. But, “no studies were identified that demonstrated that direct consumption of a GM food was associated with an increased rate of clinical allergy.” This is not definitive proof of genetically engineered foods being hypoallergenic, but it goes a long way to quell any fears about eating these foods for those with allergies.

I also found something more pertaining directly to me which I was very interested in. I have a peanut allergy, which I never had any trouble with until this year. I guess lots of random people offering me food can be dangerous if I don’t remember to ask if there are peanuts in it.

This abstract for an article I found on PubMed by a research team at Alabama A&M University describes a way in which peanuts can be engineered to lose the gene that is the primary cause for allergic reactions. This to me seems like a huge deal. If scientists are able to target this gene with post-transcriptional gene silencing (PTGS) it would “knock out allergenic proteins,” I would love for this to happen. It would possibly save a good amount of lives around the world, as peanut allergies are becoming more and more common and it is also possible to use this strategy on other foods to gain the same effect.

More recently scientists in Australia have actually found a possible way to “turn off” the body’s allergic response through gene therapy. This works because our bodies when they have allergic reactions mistake certain foods or cells as “bad” and try to our bodies down to prevent them from getting farther into us. In reality though, these foods are harmless and by basically disarming our body’s alarm system the allergic reaction and side effects that come with it, like anaphylaxis can be prevented. And the importance of this cannot really be understate for someone like myself who’s had anaphylactic reactions at least twice. Typically, each reaction is worse than the last, so I need to be extra careful that I don’t eat peanuts again and wind up dead.

According to this article, these studies that used gene therapy to stop allergic reaction was done on mice. Hopefully, there is the possibility that these trial move onto humans in the next 2–4 years. Though Professor Adam Custovic from from Imperial College London says not to get our hopes up, “we can cure allergies in mice but we cannot do it in humans” he makes the point that mice and humans are extremely different creatures. The shared similarities give us a starting point to begin to work to correct this issue in humans, but that figure of 2–4 years until a cure is apparently only a hopeful estimate. Though if scientists are successfully able to wipe the “memory” of T-cells to prevent allergic reactions it would allow patients with both allergies and asthma to be cured in as little as one visit to a doctor.

It seems like possible cures for allergies may be only around the bend and hopefully possible in the near future. There is also a great possibility of seeing more genetically engineered foods that are hypoallergenic kind of like how certain dog breeds are. In both instances, the future seems positive for allergy sufferers thanks to advances in genetic modification technology.

STEM Cells

This week I am going to take a look at STEM cells. I thought it would be interesting to look at one of the most used and accepted forms of genetic engineering in humans. To preface this post, STEM cells are super complicated stuff. For this post I tried really hard to get the basic point across about what they do and how they do it, but I honestly still do not know that much about them, so hopefully you can learn a few things from the post.

To give you some useful background info, according to the mayo clinic STEM cells are “cells from which all other cells with specialized functions are generated.” Interesting fact about STEM cells is that under the right conditions—either in the body or in a lab—they can divide and create more cells called daughter cells. These daughter cells can then either become STEM cells and reproduce more or become specialized cells to fill a need like blood cells or bone cells for example.

Using STEM cells has almost become common practice in recent years. They are typically used for treating cancer and helping to regrow and replace diseased cells, studying how diseases work, and testing new drugs to check that they work safely and effectively. They are one form of human genetic modification that really is not super controversial and is widely accepted across the board.

However, there is some slight controversy (as there is with everything) specifically regarding one type of STEM cell. Embryonic STEM cells come from human embryos that are three to five days old—called blastocysts at this stage. These types of STEM cells are the most versatile. They are a great tool to be used in researching how early human development works. They also can divide into more STEM cells or become any other type of cell in the human body and these are the ones commonly used to repair or regenerate tissue or organs that are diseased.

The controversy comes into play because the cells are coming from a fertilized human egg/embryo/blastocyst. The eggs/sperm—if procured ethically—come from informed donors who recognize what the purpose of their donation is. The embryos are then created through in vitro fertilization in a lab. The National Institute of Health recognized the concerns and potential for major ethical issues with these types of cells, so they set up some guidelines that state that embryonic STEM cells can only be used when the embryo is no longer needed.

There is also a question surrounding altered adult cells. Scientists have figured out a way to genetically reprogram normal adult cells to transform into STEM cells that act similarly to embryonic STEM cells. So far these types of altered cells appear to be working correctly in animals and in tests, but nobody is sure yet if there would be any adverse effects if these altered adult cells were injected back into a human.

Aside from those two cases, STEM cells are really not a controversial issue and one of the only instances in which human genetic engineering is viewed as wholly positive. STEM cells are used to test drugs. Currently scientists can use them to test out cancer and tumor treatments to see how they would effect all of the different types of cells in the body—because STEM cells can become any cell they need to be. But, probably the most important use of STEM cells is in cell-based therapies.

I did some reading about how STEM cells could be used in this function and it is really interesting and exciting. Nowadays we typically use organs of the recently deceased in transplants to hopefully save the lives of people with diseased or failing organs. But, with this new technology we could engineer STEM cells to grow as new heart muscle cells to help fix someone’s broken heart or as new insulin producing cells in the pancreas. This last one is particularly exciting because it is basically a cure for type 1 diabetes.

Sadly though, we are still not fully ready to go forward with this type of STEM cell therapy. So far it has really only been used for cancer patients who have received chemo therapy as a way to heal the healthy cells that have been damaged by chemo. Hopefully, scientists will continue to work with STEM cell therapy so that we will see STEM cell transplants become more common in the near future. This is one use of human genetic engineering that I am fully in support of and can say is doing all good and seemingly no harm.

Designer Babies

Today I decided that an intriguing topic to discuss would be the concept of designer babies and what they could potentially mean for our world. In my last post on this blog I wrote a little bit about the potential issues that could arise as a result of this, but with this post I will be going more in depth on the issue and would could come from it.

Image result for cost of designer babies

First, a little background on what designer babies really are. According to The Embryo Project Encyclopedia at Arizona State University, designer babies are humans that are genetically engineered in vitro. They can be genetically engineered to have specific traits for example: a certain gender or genes that are disease-free or resistant to certain diseases. You also might think that designer babies must be a new concept, but you would be wrong. In as early as 2004 the term “designer baby” was officially entered into the Oxford English Dictionary. Using in vitro fertilization is considered a form of gene editing by some and it is nothing new in the world of reproductive medicine—the first in vitro fertilized baby was born in 1978. Since then, many babies have been conceived this way if the parents had trouble with infertility or if the parents carry genes that may put their children at risk to contract serious genetic diseases.

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The first ever case of a true “designer baby” did not occur until the late 90’s. In 1996 a couple from Fairfax, Virginia used in vitro fertilization as a means to ensure that their third child would be a girl—they already had two boys and they wanted a daughter to complete their designer family. Something worth considering when discussing in vitro fertilization would be the cost. According to a fertility website in vitro fertilization will start at around $12,000 for the first cycle and for each additional needed cycle the costs would be roughly $7,000. This is not where the costs stop though, for each cycle a patient would need fertility medications which can cost between $1,500 to $5,000 per cycle.

Obviously, these costs are not feasible for all people. This is where a few ethical issues can be found. For those who cannot afford in vitro fertilization it may seem unfair that it possibly puts their children at a greater risk to develop or be born with genetic diseases or conditions that those with more money can have edited out of their children. Also something to think about, the people who can afford to go through with in vitro fertilization may have a better ability to get good healthcare for any potential problems their child would have. Whereas those who cannot afford in vitro fertilization probably would not have the money or the best health care plans that would allow them the best possible help for any potential sick kids. Basically, if genetic diseases and disorders were to be eradicated in the wealthier parts of society, the already less fortunate would be stuck trying to navigate an extremely expensive healthcare system to support their child putting them at an even greater disadvantage.

An important question to ask would be where do doctors and others in the medical field stand on this issue. Well, according to the Council of Ethical and Judicial Affairs, it is acceptable to go through with genetic selection and manipulation if it is with the purpose to prevent, cure or treat genetic disease. On the other hand it is not ethical to engage in genetic selection or manipulation for “benign traits” unless three specific criteria are satisfied. These criteria are: “a clear and meaningful benefit to the child, there could be no trade-off with other characteristics or traits, and all citizens would have to have equal access to the genetic technology, irrespective of income or other socioeconomic characteristics.” Though it is important to recognize that these are not laws, they are rules for physicians who are members of the American Medical Association (AMA) and the penalty for not adhering to these rules would be a loss of membership.

Another potential ethical issue with designer babies would be the extreme socioeconomic divide it could cause. I briefly mentioned this in my last post, but it’s worth bringing up again. If it became commonly available for people to pick out their children’s traits as long as they could afford the price we would begin to see the wealthier people separate themselves psychically from everyone else. Imagine a world where you could pay to have your child be everything you want them to be. It would simply be unfair to the less wealthy who would not be able to afford to pick out their traits, still be reliant upon the genetic lottery.

Designer babies are certainly a concept that have had a positive impact in our world today. However, if we let things slip and people attempt to abuse the technology we could see some major issues arise as a result of this powerful technology.

Is It an Issue?

With new technology comes new problems. A recent example of this is with the development of genome editing or genetic engineering. Most people probably are aware of recent advances in this technology, but for the purpose of this blog I am going to delve a bit deeper into the specifics of it.

As outlined by Genetics Home Reference gene editing allows scientists to alter to DNA of an organism. Recently, the new CRISPR-Cas9 system has been making headlines because it is a cheaper, faster, more accurate and more efficient way to edit genes. Without going into too much detail about the process, it basically allows scientists to target specific sequences of DNA to cut out or add pieces of genetic material. With this tool it is becoming easier and more likely for editing to occur that would potentially enhance traits like height, permanently altering genetic material in the germline cells (sperm and egg cells that pass on genetic material).

This is precisely what a Chinese scientist did last year when he claimed to have edited the genes of two twin baby girls. Scientist He Jiankui claims the alterations he made in the genes will prevent the girls from being able to contract HIV. This has not been confirmed though, as of now it is a claim made by the scientist. To conduct his experiment, Jiankui was able to secure funding and find volunteer couples in order to do this experiment on his own, without oversight. The twin girls were born this past November and are currently under medical supervision, whereas Jiankui has reportedly been placed on house arrest after the government found out about his experiment.

Legally, there is not currently a good standard for laws regarding human genetic modification. In China, government officials have said, He Jiankui “blatantly violated China’s relevant laws and regulations” but it seems unclear about what the particular laws and regulations are. According to Issues.org many European countries have outlawed any modification to germaline cells—effectively preventing creating genetically modified or engineered babies. In the United States the rules are not quite as clear. As the laws stands now, there are very strict regulations and lots of hoops to jump through in order to have a process for genetic modification (like CRISPR) approved by the FDA. But, once it is approved there is very little in place to stop doctors or scientists from using the technology as they please.

The laws in the U.S. seem to pose a potential problem. By allowing physicians and scientists freedom with this new technology, not only would there be many ethical dilemmas to face, but it could potentially hurt the further development of gene editing. For example, if one of the twin babies in China were to die, even if it was of a disease unrelated to their edited genes, it would put people off of gene editing and turn investors and the public off from wanting to further develop this technology. At this point, it simply is not reasonable to risk setting ourselves back in development of this technology.

Also, there is a potentially huge ethical issue that comes with the advancement of genetic editing. Should we be able to edit our DNA for non-medical reasons? Bill Gates recently has said, “this might be the most important public debate we haven’t been having.” This topic is a lot deeper than simply being able to edit specific traits and potentially create “designer babies.” Without proper regulations in place it is not reasonable to think that genetic modification would be cheaply available to all who could benefit from it, or who want to utilize it. There is a distinct possibility that editing in the germline cells would only be available for the wealthy. This would create even more inequity between the classes as there would be the possibility for wealthy families to buy their children the opportunity to be born with “superior” or more desirable genes.

The issues go even deeper than this. For many in the religious communities gene editing is morally unacceptable. As reported in a 2016 Pew research study, only 15% of highly religious Americans viewed human gene editing as morally acceptable—even if it was to give babies a reduced risk of disease. As a whole it seems like Americans may not be quite ready to accept human gene editing quite yet.

Human gene editing is an area of the medical and science world seeing huge growth recently. As we have witnessed the first use of gene editing in humans we have also seen the response by governments and scientists alike to the gene editing and it may seem as if the world is not ready to face the moral and ethical issues that arise with gene editing. It is clear that genetic modification of humans is something that should be illegal or at least not available to the public. Until more tests and experiments occur and until people change their overall view on gene editing it is not reasonable for the there to be human gene editing.