CAJ #14: Gattaca

I finally had the chance to watch the movie that first dealt with the possible ethical consequences of PGD. Gattaca (1997) is an American science fiction movie, starring Ethan Hawke and Jude Law, that portrays a society in which genetic engineering has become the norm. As you may have already guessed, the title is based on the four letters of the genetic code that represent the different bases: adenine (A), thymine (T), cytosine (C), and guanine (G). Almost the entire population in the movie is born with preselected, non-medical traits, such as height, athleticism and good looks. They are only characterized according to their DNA, while nothing else matters. You are only as good as your DNA is basically the overall theme. The few people who have been conceived the traditional way face a lot of discrimination because of their genetics. This can be seen through the eyes of the lead character, portrayed by Ethan Hawke. 

I think it's a little far-fetched and extreme because there are still regulations for the use of PGD. However, parents are nowadays already given the chance to choose some of those feared, non medical qualities. What do you think? Is PGD going to lead society into becoming a master race? Will "normal" born people be faced with genetic discrimination? I think the purpose of this movie was solely to show scientists that this technology can very well get out of control. It definitely can. Maybe you should watch the movie and see for yourself. 

The link to the trailer: https://www.youtube.com/watch?v=ZppWok6SX88  

CAJ #13: Opinion and a TED talk

• Does the science in your topic benefit everybody? If so, who does it benefit the most?

Generally, I believe that almost everyone could benefit from PGD and other related reproductive technologies. Even though it is nowadays mostly used for infertile couples and mothers who have had multiple miscarriages to conceive a healthy child, free of genetic or chromosomal disorders, further research could make it possible to detect faulty genes that are responsible for diseases such as diabetes or obesity. It does indeed benefit a lot of women who cannot conceive the traditional way, and couples who carry genetic diseases and would like for their future children to be born without them. Additionally, there are a few private clinics (mostly in the US) who offer parents the possibility of choosing their baby’s gender as well as hair and eye color.

• If it does not benefit everybody equally, should society be paying for the research?

Let’s start with some statistics here: 1 in 8 couples has trouble getting pregnant or sustaining a pregnancy. (2006-2010 National Survey of Family Growth, CDC) And it is estimated that 350 million people worldwide suffer from rare diseases, 80 % of which are caused by faulty genes. So, if more money would go into research, scientists could be able to find out which diseases are caused by which faulty genes and generations of people with genetic disorders could be prevented. People wouldn’t have to endure the consequences of their diseases anymore. PGD can nowadays be used to test for over 100 genetic conditions. Besides, it does already benefit a lot of people, although the science is considered extremely controversial.

• A TED talk related to my CAJ:

http://www.ted.com/talks/harvey_fineberg_are_we_ready_for_neo_evolution#t-1014938

This TED talk by medical ethicist Harvey Fineberg describes three possible paths for the ever-evolving human species to further develop: to stop evolving completely, to evolve naturally — or to control the next steps of human evolution, using genetic modification, to make people smarter, more athletic and simply better. What do you think?

Did it teach me anything new? 

Everything is evolving really fast. For instance, let’s take a look at the Human Genome Project: the HGP started in 1990 and it took 13 years to sequence the human genome. It cost around 2.7 billion dollars. One year later it took “only” 20 million dollars to do the exact same job, but took only 3 to 4 months. Nowadays, you can have a complete sequence of the 3 billion base pairs in the human genome at a cost of about 20,000 dollars, in about a week.

But we also need to evaluate the advantages and disadvantages that come with such new technologies. It’s never just simply right or wrong, because there are always two sides to everything. Well, that I have learned through my CAJ experience.  

CAJ #12: How does my topic connect to other fields/CAJs?

• Carola Ponjevic: Genetic engineering and enhancement 

Even though the foremost goal of PGD was to detect genetic defects, it has become a tool for enhancement. More couples now make use of this technique to choose their baby’s gender as well as its eye and hair color. It is, of course, considered extremely controversial and unethical because genetic engineering and enhancement is seen as the first step for creating real “Designer Babies”.

http://carolaamina.blogspot.co.at/

• Alexandra Perfler: Genetics 

This has probably everything to do with my CAJ. New developments and findings in genetics research made it possible to even develop reproductive procedures in the first place. And it hasn’t stopped there. Scientists are eager to develop more techniques to cure diseases during early embryonic stages.

http://peralexa.blogspot.co.at/

• Artur Shefer: Longevity and human immortality; Transhumanism 

PGD is believed to someday, in the not too distant future, be able to provide couples with the possibility to preselect traits such as longevity for their future child. Maybe with Aubrey’s findings, geneticists can finally figure out the genes that would make these traits possible.

http://arturshefer.blogspot.co.at/

• Katharina Pelich: Stem cells 

This is directly related to my CAJ as stem cells are derived from embryos that were created with in-vitro fertilization in order to help scientists figure out how to treat specific diseases, possibly grow organs etc.

http://kathyp92.blogspot.co.at/

• Katja Wallner: Eugenics 

A lot of people believe that PGD and other reproductive technologies will pave the way for eugenics, a term which is almost always associated with the Nazi time, to enhance the genetic material of human beings.

http://sparklyzombiecat.blogspot.co.at/

CAJ #11: Arguments against PGD and Co.

Hey Everyone,

As indicated from my previous posts, there isn’t a great deal of PGD supporters out there. Frankly, all technologies and techniques associated with reproductive biology and genetic engineering raise a lot of ethical concerns. But why are so many people against the notion of finding out ways to eliminate even more diseases to have a perfectly healthy child? Let’s look at some of the arguments of those opponents to try to see why they are so reluctant to welcome this futuristic trend.

Playing God. You will almost always come across the argument which says that interfering with the genetic code is against nature and that we are basically assuming God’s role. Humans have no right to change another human being’s DNA, and especially not for enhancement purposes.

Eugenics. According to the Oxford Dictionary, eugenics is “the science of improving a population by controlled breeding to increase the occurrence of desirable heritable characteristics.” PGD is used to detect defects and then discard the embryos that include undesirable traits. This could lead to creating a homogenized society, or a master race, similar to the idea Adolf Hitler had in mind. Variation, however, allows for innovation. Opponents argue that there are some amazing and inspiring people who happen to be disabled but contribute a lot to science and other fields. For instance, Stephen Hawking who is paralyzed due to amyotrophic lateral sclerosis (ALS) or Albert Einstein who had learning disabilities. These disabilities didn’t stop neither from becoming one of the successful physicists in the world and forming the theory of relativity, respectively. PGD and other genetic engineering technologies are therefore seen as a discrimination against the disabled community.

Discrimination against the poor. Not only is PGD extremely time consuming, but it is also a highly expensive procedure. It is therefore only accessible to wealthy couples. As a consequence, only the poor will have to suffer.

It is unsafe. The viral vectors that are used to bring the DNA into the cell may cause lethal immune responses or even tumors. While this argument may be valid today, it is probably a technical problem that will eventually be circumvented. Another safety argument is that when transgenes become inserted into the genome, they may disrupt functional genes and cause mutations. This has been seen during trials in mice. There is still no 100 % guarantee that this technology works on everyone equally. There is also a chance of misdiagnosis, about a 20 % chance of damaging the embryo during the biopsy process, and other yet unknown complications.

Pressure. Some women's health advocates worry that genetic engineering could create new pressures for the mother. Genetic enhancement could be subtly or coercively suggested by a partner, but also by third party groups with financial incentives such as insurance companies, a doctor, a social circle, current fashions, biotech marketers or mass media advertisers. It is not implausible that women could lose the ability to make genetic decisions about their own baby if the medical establishment or national government decided to regulate genetic engineering in some way.

Policy. What is a “medical necessity”? What is considered a “serious genetic disorder”? That’s when medical opinions vary and so a policy cannot be made to guarantee an equal distribution of PGD.

Technologies that involve changing DNA will always be full of controversy. Do you feel that you now understand both sides to it? Honestly, I do.

CAJ #10: Modified Sperm Technology

Hey Everyone,

I’ve just read this new article on yet another technique that could lead to, according to the UK’s leading fertility doctor, Lord Winston, THE breakthrough in genetics medicine! I don’t know how you guys see this, but it seems to me that scientists and doctors never cease to search for new developments to scare/ surprise us. This new method involves inserting new genetic material into sperm to replace defective genes. With this new technique, developed by Dr. Winston and his team, it could be possible to create healthy babies without manipulating the embryos at all. Artificial fertilization would be needed. This might lead to making reproductive technologies seem less frightening since embryos could stay the way they are. But where can these healthy genes be taken from? Dr. Winston and his team are currently working on creating modified pigs whose organs could be transferred into humans without causing any medical problems. In 2012, the Federation of American Societies for Experimental Biology already published a research report showing that introducing new genetic material via a viral vector into the sperm of mice leads to the presence and activity of those “designer sperm” genes in the resulting embryos. Who comes up with these discoveries, right? Well, this guy here:

This is what he had to say about this futuristic technique:

“Artificial insemination is an easy way to get something pregnant. You just modify the sperm beforehand. The idea we had was not using embryos at all. We’ve always been interested in trying to make transplant organs from the pig which would not be recognised by the human immune system. It’s a step forward in genetic research which is really interesting because if you can modify large animals and you don’t need to use IVF then obviously the biggest large animals, clearly, is ourselves."

He does also acknowledge the risk of working towards an era of eugenics, but he states that every technology has its advantages and downsides and that people should not misuse it.

“You could easily see how this kind of thing could be used in North Korea for example. I don’t think it’s very likely it will be used in the UK in a mischievous way but I’ve no doubt that given the burgeoning market, given the desperation of people who want to enhance their children in all sorts of ways, humans might be tempted to use this and that therefore it does become a form of eugenics. I’m not trying to make an exaggerated claim for what we have done at all but I think the reproductive technologies are being misused in my view. This is far more likely to be a serious threat than cloning. Cloning seems a useless technology.”

This innovative, yet still highly experimental technique could pave the way for a new development in genetics and for more diseases to be effectively cured–if it someday proves to be successful in humans.

CAJ #9: Creating a baby from DNA of three people–why not?

No, I didn’t make this up and yes, it is–thanks to the quickly advancing DNA technology–possible to combine DNA of three parents to conceive a baby. Why settle with only two parents when you can have three, right?

Of course, this special process is not applied just for the fun of it. It’s a recent technique, developed by British scientists, which can serve to eliminate specific diseases that are caused by the mitochondria, tiny structures that supply power to cells, which are inherited solely from the maternal side. You might wonder why these diseases can’t be solved with PGD only. I’ll tell you why:

99.8 percent of our DNA is located inside our cells and is inherited evenly from our parents. The remaining 0.2 percent, however, comes from our mitochondria, the parts of the cells that function as the power supplies, and passes directly from our mother to us. Now, disorders in the mitochondria can cause very serious medical conditions, such as muscular dystrophy, heart failures, sight loss and brain damage. About one in 6,500 babies is born carrying some sort of mitochondrial diseases. And because this 0.2 percent comes straight from the maternal side, there is no chance to replace it with DNA from the father. So what can be done for these babies? Just add a third, female parent’s DNA to the mix. For this, a specialized type of IVF is used wherein the genetic material from the mother’s egg is transferred into the donor egg that has its own genetic material removed beforehand. This donor egg containing the mother’s genetic material is then fertilized with the father’s sperm. The baby still receives its physical traits completely from its biological parents, but that 0.2 percent of mitochondrial DNA that would cause so much trouble is provided from the female person who donated the donor egg. The result: a mitochondrial disease-free baby thanks to healthy mitochondrial DNA from an extra parent. 



Sounds great? Well, this procedure has not become legal yet because it is considered, once again, extremely controversial and rather experimental. The main reason why this procedure hasn’t been legalized yet is because it is considered germ line gene therapy, since the replaced DNA is passed on from generation to the next. Where is the harm in that if this procedure can eliminate mitochondria related diseases within the family? The problem is that other diseases or defects could be unknowingly passed on as this technique hasn’t been tested for that long. Several people have also expressed moral and ethical concerns, arguing that this technique could truly pave the way for Designer Babies and eugenics (=the prospect of creating a perfect human population by breeding for certain genes). It is also argued that traditional IVF combined with PGD could be used instead to prevent mitochondrial defects by using only a donor egg. This would mean that the baby wouldn’t be biologically related to the mother since there would be only the father’s sperm and the donor’s egg. To put a baby through the unknown risks and consequences of this technique over safe egg donation so that a mother can be biologically related to her child is believed to be even more unethical.

The UK government, however, is set to end the debate and legalize this inheritable human genomes modification. Ministers had decided that the health risks of mitochondrial diseases outweigh all concerns and that regulations will most certainly be drafted by the end of 2014. It is predicted that by early 2015, the UK is going to become the first country worldwide to perform this “three-parent babies” procedure. While many scientists and doctors welcome this new era in genetics, others claim that it will result in more harm than good as the technique is too experimental and hasn't passed enough of the safety texts.

What do you think? Great solution to eradicate severe mitochondrial diseases in the first place, or just another way for scientists to “play god”?

CAJ #8: My mum is not happy about this!

I deliberately chose to talk to my religious, not-very-fond-of-technology mum about the highly controversial topic of Designer Babies. My sister was in the same room but did only join my laughter and, well, it was quite a fun discussion!

I began to explain that I am currently working on a journal to learn more about this advanced technology that is used to “design” a baby outside the mother’s body. I tried, as simple as possible, to explain the procedure known as preimplantation genetic diagnosis and that through this and in-vitro fertilization, doctors are given the chance to genetically modify embryos to reduce genetic disorders. She immediately remembered the movie we once watched together in which a girl was ‘created’ to help keep her older sister alive. So I asked her what she thought of this technology and she wasn’t entirely against it. She actually thought it was great because it can prevent unborn children from having genetic diseases. She also added that it is a wonderful opportunity for infertile couples. Then I continued telling her that this technology is far more advanced than most of us realize and that in the not too distant future, it will be possible to preselect all sorts of traits and qualities to create perfect human beings. She asked what I meant and I elaborated and told her that parents, wealthy parents in particular, will most certainly be able to choose traits such as height, longevity, appearances, etc., just like it is already possible to select the gender. “What are they teaching you at this university?” were her exact words. After my sister and I had finished laughing, I told her that this gender selection is really possible due to the fact that only the X and Y chromosome needs to be identified. She couldn’t really believe it, but got really angry and said that this is not natural anymore and that god is the only one who decides the gender and the other traits. I decided to defend this concept of designer babies and asked her further why she thought that this isn’t acceptable but that it is okay for babies to be born without diseases. Why shouldn’t parents have the chance to provide their children with the very best? She couldn’t quite present some objective arguments because she kept saying that it is simply not right to create a baby the way you want it since having a baby is a miracle by god and that scientists have no business interfering with that. I argued that god created the earth and everything in it and that he wanted us to profit from it all, so why shouldn’t we benefit from this advanced technology as well? She starred at me and asked what was wrong with me and if I now consider doing that someday. It went on like this for a couple of minutes with my sister and I laughing even more as my mum told my dad, who had just arrived home, that we had gone crazy and wanted to interfere with god’s creation.

This conversation proved that this growing trend of designer babies will certainly cause a lot of controversy. I honestly don’t know yet what to think of it all, but since I have been reading a lot on this topic lately, I now see things from other perspectives and have therefore become more open minded.