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Bibliography/Sources

Websites:

http://www.socalfertility.com/more-on-pgd-pgs

http://emedicine.medscape.com/article/273415-overview

http://en.wikipedia.org/wiki/Preimplantation_genetic_diagnosis

http://www.5280.com/magazine/2005/08/miracle-molly?page=full

http://www.advancedfertility.com/pgd-costs.htm

http://community.babycenter.com/post/a43142251/pgdpgs_cost

http://ivf.org/treatments/advanced-ivf-techniques/pgdpgs/

https://www.fertilityauthority.com/articles/abcs-pgd-pgs-and-more

http://genesisgenetics.org/pgs/

http://uchealth.com/fertility/patient-services/pgd-pgs-preimplantation-genetic-diagnosis-screening/

http://www.rsrevision.com/GCSE/christian_perspectives/genetics/designer_babies/church.htm

http://www.usccb.org/issues-and-action/human-life-and-dignity/reproductive-technology/begotten-not-made-a-catholic-view-of-reproductive-technology.cfm

http://www.usccb.org/issues-and-action/human-life-and-dignity/reproductive-technology/upload/In-Vitro-Fertilization-The-Human-Cost-2014.pdf

http://www.nature.com/scitable/forums/genetics-generation/case-study-in-savior-siblings-104229158

http://www.rsrevision.com/GCSE/christian_perspectives/genetics/saviour_siblings/introduction.htm

http://jme.bmj.com/content/30/6/533.full

http://www.thebioethicsproject.org/essays/child-autonomy-and-the-rights-to-ones-own-body-pgd-and-parental-decision-making/

http://www.startribune.com/lifestyle/103584799.html?page=4&c=y

http://embryo-ethics.smd.qmul.ac.uk/tutorials/embryo-and-the-law/saviour-siblings/

http://www.nature.com/scitable/forums/genetics-generation/case-study-in-savior-siblings-104229158

Mutlimedia:

https://www.haikudeck.com/savior-siblings-education-presentation-Vg2EsQarpc

https://www.google.com/search?q=savior+siblings&biw=1280&bih=605&source=lnms&tbm=isch&sa=X&ei=yEo-VcWgGq7IsQSa8YFA&ved=0CAYQ_AUoAQ#imgrc=9kbC3U0h05CrKM%253A%3BRAgAX-5DSaXisM%3Bhttp%253A%252F%252Fa.dilcdn.com%252Fbl%252Fwp-content%252Fuploads%252Fsites%252F8%252F2011%252F05%252Fivf-300x23711.jpg%3Bhttp%253A%252F%252Fwww.babble.com%252Fpregnancy%252Fthe-moral-dilemma-of-savior-siblings%252F%3B300%3B237

https://www.youtube.com/watch?v=fyB9PuGc3CU

http://www.advancedfertility.com/preimplantation_genetic_diagnosis.htm

https://www.youtube.com/watch?v=xkT0CzcaXmo

http://en.wikipedia.org/wiki/My_Sister’s_Keeper_(novel)#/media/File:Sisterskeeper.jpg

http://www.imdb.com/media/rm181438464/tt1078588?ref_=tt_ov_i

Books/Movies:

My Sister’s Keeper, Joudi Picoult (2004)

My Sister’s Keeper (movie 2009)

Scholarly Articles:

http://school.eb.com/levels/high/article/42232#279394.toc (Encyclopedia Briticanna Online)

http://web.a.ebscohost.com/scirc/detail/detail?sid=9a334ae1-e740-4dc8-8410-ec7a195862ce%40sessionmgr4004&vid=0&hid=4201&bdata=JnNpdGU9c2NpcmMtbGl2ZQ%3d%3d#db=sch&AN=13486098 (Science Reference Center)

http://web.a.ebscohost.com/scirc/detail/detail?sid=017651fa-baef-4aea-a505-5a7f29dda198%40sessionmgr4002&vid=0&hid=4201&bdata=JnNpdGU9c2NpcmMtbGl2ZQ%3d%3d#db=sch&AN=15331740 (Science Reference Center)

#Sources

Not only does the action of having a child to save another sound unethical, but there are also things that follow that child forever. Once they know what they were brought to the world for, they can feel unwanted. The parent’s attention usually follows the sick child so the savior sibling will not have the attention they need.

Source:

https://www.haikudeck.com/savior-siblings-education-presentation-Vg2EsQarpc

#multimedia

This is the embryo biopsy that is done for PGD/PGS from either a 3 day old embryo or a 5 day old embryo. The microscopic needle takes a cell or multiple cells that will later be tested using PCR and CGH to detect any possible future health problems.

Source:

#mutlimedia

This is a story about a girl named Anya who needed a bone marrow transplant to survive. Her medical condition could be treated with antibiotics and other things but it could not be cured unless you go through a transplant. In Russia, however, there are no bone marrow donor registries so in order to find a match outside of family proves to be extremely expensive, difficult and time consuming– something not all families have. Doctors advised the parents to have other children to see if they would be a match so PGD/PGS was not used but the term savior sibling still applies. In this case, the morality of the actions are very controversial. They parents had the twins to save Anya. There does not seem to be a different reason for wanting other children that is greater than having a donor for Anya. There is also the fact that Sasha and Anya were now both in danger and both possibly facing death because Sasha was very young (10 months) when the transplant was made and Anya’s condition was fatal. These decisions the parents made were very risky but Anya and Sasha both made it through and are both alive. However, just because there was a happy ending, does it mean that it is okay to do something like this?

Source:

https://www.youtube.com/watch?v=fyB9PuGc3CU

#multimedia #casestudy

Timeline

1968-Robert Edwards and Richard Gardener were the first to successfully perform an embryo biopsy. They were testing rabbit embryos and were able to identify the sex of the embryo.

Mid 1980s- The testing was later used on human embryos in the United Kingdom as a prenatal diagnosis. It was in the 1980s that IVF was fully developed. They mainly focused on gender and any X-linked disorder and used PCR to see if anything was wrong. At first only 5 chromosome could be tested but that number rose to 7, 9, and finally, 12 with the method called FISH.

1989–Handyside performed PGD and it resulted in a birth of an unaffected child who was at risk of having an X-linked disorder.

1990s–PGD was being used to see if anyone was at risk of any genetic disorders like sickle cell anemia and muscular dystrophy. Newer technology called Comparative Genomic Hybridization (CGH), provides information on all 23 chromosomes from one cell of a 3 day old embryo or several cells of a 5 day old embryo.

July 4, 1994- Molly Nash is born with Fanconi Anaemia. This is the first savior sibling story that has been heard around the globe.

The future– Doctors think that PGD as well as PGS will soon be routine in the next few years because of its growing popularity with people and labs in different places. PGD and PGS can both be done with the same embryo cells.

Sources:

http://www.socalfertility.com/more-on-pgd-pgs

http://emedicine.medscape.com/article/273415-overview

http://en.wikipedia.org/wiki/Preimplantation_genetic_diagnosis

http://www.5280.com/magazine/2005/08/miracle-molly?page=full

#Timeline #History

Cost

The average cost of PGD/PGS to have a savior sibling ranges from about $17,000-$25,000 in the US if all the money is out of pocket and you have no insurance. With insurance the price goes down to about $4,500. These prices do not include how much the medicine would cost after the process. There are different prices in different parts of the United States and in different clinics. There are also different plans and packages so some might not be as complete as others for a lower price. This amount of money is a lot and it is not fair that people have to pay it to be able to have a healthy child. These two processes are used for savior siblings but they can be used to for regular children if you are scared your future child could have a disease or if you are older and prone to miscarriages. The price for a healthy child should not be so high, especially if there is a high risk of failure. Many people have to do multiple cycles before it is successful. People who really want a child of their own that is most likely going to be healthy can save this money and pay for this process if they have a lot of insurance coverage. However, if their insurance doesn’t cover much or if they have to pay it all out of pocket, the price is really high and not many people would be able to afford it. Some of the middle class can probably afford it if they save up and most of the upperclass can afford it too. However, the people with less income will not be able to afford it and those people are the ones who might not even be able to afford insurance so the price they would have to pay would be much more than those who have insurance. In my opinion, in order to guarantee having a healthy child, PGD and PGS should cost a lot less and be available at a more fair price for everyone.

Sources:

http://www.advancedfertility.com/pgd-costs.htm

http://community.babycenter.com/post/a43142251/pgdpgs_cost

#cost

PGS is usually used on older women because it helps prevent miscarriages and serious health problems that increase for the child because of chromosomal abnormalities. PGS and PGD are both used for savior siblings.

Source:

http://www.advancedfertility.com/preimplantation_genetic_diagnosis.htm

#multimedia

Medical Research

In order to do a preimplantation genetic diagnosis, you must draw blood to remove cells from an embryo with a microscopic needle and test it for a variety of different diseases. Most single-celled diseases for can be easily identified by looking for mutations in the cells taken out of the embryo. This process can increase your chances of having a child without heritable genetic diseases.CRM frequently tests embryos for the following diseases using PGD:

Beta-thalassemia

Cancer predisposition genes (BRCA1 and others)

Cystic fibrosis

Duchenne muscular dystrophy

Fragile X syndrome

Huntington’s disease

Multiple endocrine neoplasia

Retinoblastoma

Sickle cell anemia

Tay-Sach’s disease

Preimplantation genetic screening uses the same process with removing cells from the embryo but for a different reason. The cells are tested to see if there is a gain or loss of a chromosome, which could increase risks of an unhealthy child or even a miscarriage. It uses array comparative genomic hybridization microarray technology to test all 23 chromosomes. This process is also called aneuploidy screening and is done on day 3 or day 5. This is mainly used for older parents, usually over the age of 35 because it increases the success of having a child with IVF.

The risk of misdiagnosis is less than 1% but still possible so prenatal testing later in the pregnancy is strongly encouraged too.

Sources:

http://ivf.org/treatments/advanced-ivf-techniques/pgdpgs/

https://www.fertilityauthority.com/articles/abcs-pgd-pgs-and-more

http://genesisgenetics.org/pgs/

http://uchealth.com/fertility/patient-services/pgd-pgs-preimplantation-genetic-diagnosis-screening/

#research

Catholic Church View on PGD/PGS

“Donum Vitae teaches that if a given medical intervention helps or assists the marriage act to achieve pregnancy, it may be considered moral; if the intervention replaces the marriage act in order to engender life, it is not moral.”

“Preimplantation diagnosis is a form of prenatal diagnosis connected with techniques of artificial fertilization in which embryos formed in vitro undergo genetic diagnosis before being transferred into a woman's womb. Such diagnosis is done in order to ensure that only embryos free from defects or having the desired sex or other particular qualities are transferred....diagnosis before implantation is immediately followed by the elimination of an embryo suspected of having genetic or chromosomal defects, or not having the sex desired, or having other qualities that are not wanted. Preimplantation diagnosis – connected as it is with artificial fertilization, which is itself always intrinsically illicit – is directed toward the qualitative selection and consequent destruction of embryos, which constitutes an act of abortion. Preimplantation diagnosis is therefore the expression of a eugenic mentality that "accepts selective abortion in order to prevent the birth of children affected by various types of anomalies. Such an attitude is shameful and utterly reprehensible, since it presumes to measure the value of a human life only within the parameters of 'normality' and physical well-being, thus opening the way to legitimizing infanticide and euthanasia as well.By treating the human embryo as mere "laboratory material", the concept itself of human dignity is also subjected to alteration and discrimination. Dignity belongs equally to every single human being, irrespective of his parents' desires, his social condition, educational formation or level of physical development.” (Dignitas Personae, 2008)

PGS uses IVF which does not help or assist the marriage act to achieve pregnancy because it is missing the act of love (sex) part of marriage. Also, according to the US Conference of Catholic Bishops and their research, there are many dangers that come with IVF, like an increased risk of ovarian cancer and mix ups like being inseminated by a different person than naturally intended. The Catholic Church overall does not like PGD because it violates the dignity of the child being conceived and reduces them to an object to help another child. The unhealthy embryos are discarded and basically killed. The Church is against the IVF process and therefore, also against savior siblings. The children are also seen as designer babies because they are being selected and you only take the ones that seem useful to you. Although it is not determining whether the child will have a certain eye color or aesthetic physical attributes, things like whether the child is male or female or if they are matches with a sibling are taken into account and in that way they can be seen as designer babies, which is immoral because you basically want a certain type of child instead of accepting them for who they are and who they are meant to be.

Sources:

http://www.rsrevision.com/GCSE/christian_perspectives/genetics/designer_babies/church.htm

http://www.usccb.org/issues-and-action/human-life-and-dignity/reproductive-technology/begotten-not-made-a-catholic-view-of-reproductive-technology.cfm

http://www.usccb.org/issues-and-action/human-life-and-dignity/reproductive-technology/upload/In-Vitro-Fertilization-The-Human-Cost-2014.pdf

http://school.eb.com/levels/high/article/42232#279394.toc (Encyclopedia Briticanna Online)

#Church

This story is based on the Molly Nash story. Although the movie and book have different endings, there is one thing that stays the same– the way the family is represented. It is obvious that the mom loves her child but it is taken to the next level by the way she treats her other children. She forgets about her son and her other daughter and what they might feel. This might not be the case in the real life story and the youtube video I posted before this shows how damaging and hurtful these stories can be. People don’t usually try to see the real story and they don’t understand that when things are based on a true story, that it is not what really happened.

Sources:

http://en.wikipedia.org/wiki/My_Sister's_Keeper_(novel)#/media/File:Sisterskeeper.jpg

http://www.imdb.com/media/rm181438464/tt1078588?ref_=tt_ov_i

#multimedia

Here is a short video further explaining the Molly Nash story. There are many things we don’t take into account when we hear about stories like theirs and I think this video really shows us the Nash family’s perspective on their decision to have a child and using PGD to save their other child. I think it is also important to see how “My Sister’s Keeper” really doesn’t do the real story justice. “My Sister’s Keeper” is based on the Nash story and here you see why they wish it was never written, let alone made into a movie. It shines a negative light on the real story.

Source:

https://www.youtube.com/watch?v=xkT0CzcaXmo

#multimedia #casestudy

Case Study: Molly Nash

The most famous savior sibling case is the story of Molly Nash and her family. Molly was diagnosed with Fanconi Anaemia, a rare blood disorder that almost always results in leukemia. Molly was suffering from progressive bone marrow failure and needed a transplant but none of her parents were a match and it is a very dangerous procedure if the transplant doesn’t come from a family member, in most cases, a sibling. If a match with a willing donor is found, the body usually rejects the transplant when the match is not related to the patient. The Nash’s have always wanted other children so they decided to use PGD to make sure their child would not only avoid being at risk of Fanconi Anaemia, but also so that their child could be a match for Molly’s tissue. They had a son, Adam, after four failed attempts using IVF. They used his placenta and umbilical cord stem cells to help Molly recover from her bone marrow failure and make her less at risk for leukemia. This did not cure Molly, but she is much healthier. She still has Fanconi Anaemia but she can live it with comfortably even though she has to get check ups often. Her parents had another child later using PGS to make sure the child was not at risk for Fanconi Anaemia.

There are many ways to approach a situation like this. Many people think the PGD was a good decision, while others can argue that it is not. In my opinion, it did work out for all the children so it could not have been that bad. However, in other cases, like the Hashmis family’s, PGD doesn’t always work. They went through PGD to ensure their child would not get beta thalasseamia, a fatal condition in the first few years of life. However, the PGD was unsuccessful and their child, Zain, was born with the condition. They had four other children after, who were all unsuccessful matches for him. This process can be dangerous and even result in death. Instead of using PGD when you have a child, to ensure that your child will not have a disease, you can adopt another child instead. There are lots of children who need homes. Also, the whole PGD process is very expensive because it uses IVF and there can be many failures, which means that in order to be successful, the price to pay is a lot. This is a problem because a lot of people can not afford this process and also, you are putting a price on a child’s life by paying to ensure they will be healthy. During IVF, there is also the issue that there are embryos that won’t be used and we are essentially saying they are not worthy of life because they will probably be sick in the future. We are violating the human dignity of this child and using them as a means to an end by using their body parts to save another child’s life without their full consent. Although the Nash family said they always wanted children, it can not be proven that they really meant that. It could be an excuse for the parents to justify what they did. Not all cases end so positively like the Nash family’s story did. PGD is a very controversial topic. It worked out well for the Nash family, but what about the Hashmis family? There are reason’s why there are regulatory laws when it comes to reproductive technology.

Sources:

http://www.startribune.com/lifestyle/103584799.html?page=4&c=y

http://embryo-ethics.smd.qmul.ac.uk/tutorials/embryo-and-the-law/saviour-siblings/

http://www.nature.com/scitable/forums/genetics-generation/case-study-in-savior-siblings-104229158

#casestudy

Background on Savior Siblings

The idea of having a savior child was introduced when a child had a disease or problem that required them to get a bone marrow transplant. The donor has to be a sibling and an immunological match to the person in need of the transplant to ensure that the transplant will work. The probability of a sibling being your immunological match is 1 in 4. That’s why doctors introduced a technology called PGD, preimplantation genetic diagnosis. This is for parents that want to ensure their future child will be a match to their already existing child so they can help save their life. They use IVF for this process and then check on the embryos to make sure there are no genetic diseases passed on to them (PGD) and that they are an immunological match to the other sibling (PGS). The matches are then put into the mother and blood is taken from the umbilical cord to replace the sick child’s bone marrow. The baby is not harmed during that procedure.

This problem became well-known since My Sister’s Keeper was written by Jodi Picoult, who was inspired by the Nash Family story. There are many sides to the story that are shown in the novel, in the movie, and even another story that is not as well-known, The Miracle of Molly by Amanda M. Faison. From what I read, PGD is not a bad thing to do, depending on the situation. It is a form of technology that could essentially benefit two people. If a child is truly wanted, then it should be no problem having that child and making sure they won’t get a disease another child has had. It is just another benefit that the child could help save their sibling’s life if they take blood from the umbilical cord. This process is in no way harmful so I support it. However, in other cases where other body parts have to be donated, both children can be harmed and death can result from it. Also, it could limit the child that is already healthy. So in my opinion, having a savior child can be good in some cases. However, many other people have arguments that support any type of situation and there are also arguments that are completely against the whole process.

Sources:

http://www.nature.com/scitable/forums/genetics-generation/case-study-in-savior-siblings-104229158

http://www.rsrevision.com/GCSE/christian_perspectives/genetics/saviour_siblings/introduction.htm

#History

Pros and Cons of Having a Savior Child

There are pros and cons to having a savior child.There are many things that are not ethical when it comes to making a savior child. Below are the cons.

Mostly seen as commodities because they are not made out of love, but for the sole purpose of saving a life.

They are brought into the world and have organs and other body parts taken from them to be given to someone else without their consent.

This mainly touches on the fact that people should never be used as a means to an end as is taught in Kantian ethics.

There is also the slippery slope argument that says that savior siblings will lead to greater things that are not ethical, like designer babies.

Some siblings have to donate things that are not replaceable, like kidneys.

Below are some pros to having a savior child.

There is a bigger chance that the child can save another child’s life.

Designer babies are a thing now and so why not use it for something like saving a life, rather than choosing how your child will look or what gender you prefer it to be?

Savior siblings have a much bigger chance of being a donor match than just having a child and hoping for the best.

Having a savior child also ensures that the child will be born as healthy as can be so they can donate to a sibling.

In most cases, no harm comes to the savior sibling because most procedures are safe.

There is also a greater chance that the savior sibling will be proud of what they have done if they save their sibling’s life in the future.

As seen in My Sister’s Keeper, Ana was happy to save her sister’s life but she fought for rights to her own body because her sister said it was time for her to leave the world.

There are good arguments for and against having savior babies. If you take all these pros and cons into account, it is possible to see whether or not having a savior child is ethical or not in your opinion.

Sources:

http://jme.bmj.com/content/30/6/533.full

http://www.thebioethicsproject.org/essays/child-autonomy-and-the-rights-to-ones-own-body-pgd-and-parental-decision-making/

http://school.eb.com/levels/high/article/42232#279394.toc (Encyclopedia Briticanna Online)

#prosandcons

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