Today in Biology we were learning about The Human Genome Project; what the project aims to do, the benefits and the ethical concerns of the project. I found this discussion very interesting and would like to share some of the topics discussed and my views on them.
The developments of scientific research in the last decade have significantly advanced our understanding of DNA, and how our genetic code controls who we are. In 2003 human DNA was sequenced for the first time. Since then many people have been able to have their DNA sequenced and the applications of this have expanded greatly. It can now be used to carry out DNA screening/testing, as well as forensics, identity testing and research into evolutionary history. Genetic screening/testing includes pre-implantation screening (on embryos when IVF is carried out), pre-natal screening, newborn screening, genetic disease carrier screening and diagnosis of genetic diseases. Although these may be beneficial there are also many social/ethical concerns which accompany them.
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Human embryo created by IVF |
If say a couple knew that they were both carriers of a genetic disease then they may opt for some kind of genetic screening to eliminate the chances of their children having the disease. This could be done pre-implantation if IVF is carried out, or pre-natal. In this case either the embryos which test positive for the disease would be destroyed before the remaining ones are implanted back into the mother, or foetuses which have the disease will be terminated. Some people are very much against this process being used for many reasons. You may think that in this situation it is very beneficial as it is preventing a genetic disease being passed on and so most likely giving the child a better quality of life, but is this what would have happened naturally. If not, are we 'playing God' by selecting the offspring we have? Some people are also very much against the embryos being destroyed or foetuses being terminated. Peoples views on this vary depending on when life is considered to begin (but that is a whole other topic for another day!).
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What if you had been designed? |
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There is also the issue that in using this technology we could reduce the genetic variation of our species. Now that we better understand what different genes code for and have the technology to manipulate DNA the idea of genetically engineered babies has come about. It is the idea that we can produce a baby with preferred genes, say the gene for brown hair if that was a desired characteristic. This removes the natural selection of characteristics which could lead to us being less able to adapt to change, and even the possibility of us designing everyone so that they were 'perfect' so we all became a bunch of clones. Also if some characteristics are chosen over others this could be a form of discrimination.
There is also a risk that by eliminating genes seen as 'bad' for causing genetic diseases we could in the process get rid of genes that are beneficial. Such as the gene for cystic fibrosis. This is a recessive gene and so you would only suffer from cystic fibrosis if you had two copies of the gene. However, if you only have one copy of the gene you are simply are carrier of the gene and this has been shown to protect against the disease tuberculosis (TB). There are other cases similar to this, such as being a carrier of the gene for sickle cell anaemia gives protection against malaria.
Newborn babies and young children can also be screened for genetic diseases at the request of their parents. There are issues with this as the child does not get a choice whether or not they want to be tested. If they are found to have a genetic disease, is it right for them to be told? Is it right for the parents to keep it from them? If you had a choice, would you want to know the future of your health? If there was no treatment for the disease, would you rather live your life as normal without knowing?
There is also an issue that if you are tested for genetic diseases as an adult, who gets to know the results. For health insurance companies it is a requirement that you must disclose any health issues that you know of. If you have a genetic disease it may mean higher costs, but is this discriminating against people for their genes which can't be controlled or changed? Also this makes it beneficial not to be tested as you would not know and so would not be obliged to tell anyone. There are also issues as to who else gets to know, such as employers. Does an employer have the right to know if a potential employee has got a genetic disease which could affect how long they could be working?
The discussions on this topic are endless, but I have my own opinions on some of these issues. I think that the idea of genetically engineered babies will always be wrong and unnatural. I think that newborn babies and young children should not be tested for genetic diseases unless they are showing symptoms of a disease. We should be allowed to choose when old enough if we would like to be tested for genetic diseases, and fully think through the decision and the implications of that decision beforehand. Now this technology is available to most people it would be reasonable for everyone to think about whether if they had a genetic disease, would they like to know about it or would they rather live none the wiser. As for genetic screening before we are born I am not so sure I have a solid view on this. When IVF is involved, that in itself is already an artificial procedure. Because there is (although extremely unlikely) a possibility that the same egg and sperm fertilised during IVF could have been fertilised naturally, there is then just the choice of which embryos get implanted back into the mother and this also could have happened naturally. Although when a foetus is screened and then terminated if it is found to have a genetic disease, I think this is more unnatural. As the foetus was conceived naturally and if it weren't for the technology we have now there would be no way of knowing this. Also the foetus is a lot more developed than the embryos that would be discarded after IVF. If there was no intervention then the baby would be born naturally and nobody would choose not to have been born and to have lived.