Category: My Sister’s Keeper

In a world constantly changing and evolving, the idea of progress is today at the heart of our globalized societies. By definition, the idea of progress is an improvement, a development or a change. Everything around us, from industries to educational systems, social relations, and scientific fields is in the middle of huge development. Today I am going to talk about the progress that has been happening in the scientific fields and more specifically I will focus on genetic progress and selection. To what extent genetic progress is at odds with morality? And how can it change people’s vision of mankind? Genetic progress just like any progress has some positive and some limits and raises a lot of debates and questions with morality and vision of mankind. The idea of genetic progress is represented in the following documents:

“Odd man out” (p.62), an article written by CHS Globe Online (p.64), an article written by USA Today (p.64), two texts extracted from The Guardian Weekly (p.66) and “Fighting for a future” written by Jodi Picoult extracted from the novel My Sister’s Keeper in 2004.

First of all genetic progress has positive effects. One positive aspect of genetic progress is that it allows people to learn and know more about genes. Thus, it allows to know better genetic diseases and in this way, to know how we can cure them. Genetic progress permits to avoid diseases that are incurable with medical treatments. It also permits to cure genetic diseases using PGD-preimplantation genetic diagnosis- for example, if a couple has a child who has a mortal genetic disease, they can choose to design a medicine baby who can save his/her brother/sister. This is seen in the text extracted from My Sister’s Keeper, it is the story of a medicine baby named Anna who was designed to save her sister Kate who is suffering from leukemia and all along Anna was helping her sister Kate fighting leukemia by giving her blood. Moreover, this has been also seen in the article written by USA today where Molly has Fanconi’s Anemia, “ a rare illness that kills many of its victims before the age of 7” and she was cured because her parents, thanks to PGD designed her brother Adam who had an immune system characteristics that were an ideal transplants for his sister. A second positive aspect of genetic progress is that it allows couples who are having trouble conceiving a child or cannot have at all children, to have children indirectly through surrogate mothers. A surrogate mother is a woman who can carry the children of a couple who was conceived in vitro and usually, the surrogate mother gets paid to do so. This phenomenon of surrogation is illustrated in the extracted text of The Guardian Weekly where a poor Indian woman decides to carry a couple’s child in order to gain money. A third positive aspect of genetic progress might be that through PGD, couples now can choose how their baby will look like, what hair color he or she will have, his level of intelligence which is illustrated in the article written by CHS Globe Online.

Genetic progress has some positive aspects but has also limits and a lot of critics.

Secondly, genetic progress has some limits. One of the limits is that it can cause Eugenics, which is “ the science which studies methods of improving the genetic composition of the human race by selective breeding”. In other words, eugenics is a genetic selection into the population, where all forms of handicap or difference will be rejected. When it comes to the genetic traits of a population, ‘selection’ is the process that chooses those traits. And Eugenics can be considered an artificial selection that interferes with the natural selection because it favors one sort of genotype, always the same. It is the case for cloning, where there is just only one model to follow, one kind of genotype to duplicate, leading for all the different identities of people to be wiped out and it leads to having no genetic diversity anymore. This is shown in the cartoon named “Odd man out”, where we can see five men on a factory belt, four of them look perfectly alike, we can assume they are clones and they are all tall and muscular and in the middle of these four men we can see a small skinny boy and he is about to be thrown into the dumpster situated in foreground on the right of the cartoon and that has written on it “ Clones R Us” and “Rejects” because he doesn’t look like the clones and he doesn’t correspond to the criteria of beauty wanted. They do not accept difference and this cartoon is a kind of criticism of the genetic progress because with this kind of progress people who are different and not with the required genes are being whipped out. Another limit and criticism of genetic progress raise is that the babies who are being chosen as the embryo who has the perfect genetic match (through PGD) to be medicine babies, meaning that they are chosen to help someone who is sick by giving blood or kidneys or anything really, are feeling rejected. And this is the case for Anna the little girl who was born to help her sister Kate to be cured of leukemia. Anna feels tired and left out and really bad because all she does is give her sister blood or anything and she doesn’t get any attention and she doesn’t have a normal childhood, she’s constantly in pain, nobody asks for her opinion if she wants to help and the whole thing just never stops. And so she hires a lawyer to help her make it stop.

In conclusion, genetic progress can be very helpful to prevent or to cure genetic disease by using preimplantation genetic diagnosis, but it raises many ethical issues like eugenics which select an only model of genotype and it prevents genetic diversity, but also many people consider it to go against religion because they feel like if we choose our baby we are meddling god’s role which goes against some people’s moral and by choosing your baby’s features you are changing your vision of mankind because you can actually plan how he looks like and many people consider this to be a very dangerous matter while others disagree.

Annotated Bibliography

Gregory, Anthony. “Why Legalizing Organ Sales Would Help to Save Lives, End Violence.” The Atlantic, Atlantic Media Company, 8 Nov. 2011

The Atlantic Magazine wrote this article to help their readers understand why legalizing organ sales is beneficial from saving lives to ending violence.This article explains how only a certain number of kidneys are available every year for the thousands of patients waiting. It goes on to talk about how Levy Izhak Rosenbaum had to plead guilty for the sale of his kidneys even though everything went smooth and both sides are happy and living healthy lives. The article takes into question why the sales of organs are illegal when its okay to be compensated for giving blood, semen, and eggs.

There author of the article is Anthony Gregory, who is a research editor at the Independent Institute. At the Independent Institute, they network with scholars to organize research that goes with today’s environmental health and science and combines it with the economic and legal aspect. The research is spot on. It has statements from professionals like transplant surgeon Nadley Hakim. The intended audience of this source is for people who are not really sure on where they stand. It is pro legalizing and pretty much wants the reader to be to pro legalizing it also.

Picoult, Jodi. My Sister’s Keeper: A Novel. New York : Washington Square Press, 2005, c2004. Print.

My Sister’s Keeper, a novel by Jodi Picoult ties back into my theme of how important it is to have to the right to choose what to do with our bodies. This story is about Anna Fitzgerald who’s only reason of being a child to Brian and Sara is to be a donor to her sister Kate, who was diagnosed with Leukemia. Since she was born Anna has always donated to her sister. At 13 years old her parents are asking her to donate her kidney. Anna refuses and files a lawsuit against her parents to regain the parts to her body. Fast forward to the trial and the judge rules in her favor. Anna doesn’t have to donate her kidney. After leaving the courthouse, Anna is an accident. After many attempts to save her, she is declared brain dead. Her kidney is donated to Kate, who makes a full recovery and goes on to live her life.

Jodi Picoult, the author, is the #1 best-selling author of 25 novels including My Sister’s Keeper. Picoult holds many awards. She’s earned awards from New England Bookseller Award for Fiction, the Alex Awards from the YALSA, a lifetime achievement award for mainstream fiction from the Romance Writers of America, and the NH Literary Award for Outstanding Literary Merit. Jodi herself went through something similar with her son, Jake, who had cholesteatoma. A tumor in his left ear. He underwent 13 surgeries and is still in recovery.

Don Tucker and Adam Avery. The Gift, Funhouse Studios, June 2014

The song, The Gift, is about Don Tucker who received a liver transplant from a dying mother. The song’s lyrics talk about a donor’s troubled soul could finally rest and be at peace. All while giving the recipient a second chance. It continues to go on about the recipient got a second chance to be a better person, and that is only thanks to the donor for giving him “the gift”.

The writer of this song is Don Tucker himself with a little help from his friend Adam Avery. Don Tucker is a guitarist in Arkansas. He wrote this song after receiving a liver transplant in October of 2013. He was beyond thankful for getting a second chance at life. After finishing the song he sent it to the transplant team at UAMS Hospital in Little Rock, Arkansas. Shortly after, he received a message from the Arkansas Donate Life asking to use the song to promote organ donor awareness. He and Adam offered the song, The Gift, to help their cause.

Houser, Kristin. “Black Market Bodies: Legalizing the Sale of Human Organs Could Save Lives.” Futurism, Futurism, 6 Nov. 2017

This article educates us on the lack of donors for all the patients who are in desire need of an organ. According to the World Health Organization, families of patients become desperate and purchase an organ, illegally, through the black market. It goes on to say how legalizing the sale of human organs in 1980 in Iran has worked for them. Now, many decades later, every person who has ever needed a kidney in Iran, has received one. In 2014 alone, around 5,000 people died waiting for a kidney. Desperate times call for desperate measures. According to the WHO, middle to high class people make the illegal purchases of organs because they can afford to do so. The donor is usually a low class individual who’s reason for selling to avoid living in poverty. Because it is illegal, these donors get low level surgeons to perform their surgeries not realizing the risk they are taking. If legalized, donors will treated just as well as the recipient. It has worked in Iran, what is stopping it from working around the world?

The author of the article Kristin Houser is a write for the Futurism Media Company. Futurism is an an independently owned media company based out of New York City. Futurism is known for respecting the view of experts in the scientific fields. The media company is based on scientific sourcing. Within the article, Houser uses many statistics to grab the reader’s attention. This article was written only two years ago and is still relevant today. The article is very factual, with no opinion. A very good piece to use in a research project.

Horra, Luis Pablo de la. “Why We Need a Market for Human Organs.” CapX, CapX, 2 Aug. 2018,

The article starts off with telling us to open our eyes and see how not having an open market for human organs is killing people all over the world. The article stresses greatly that we are the owners of our bodies and we should do with them as we please. Legalizing the sale of human organs would improve and save thousands of lives. Thousands die every year because they simply don’t have 365 days to give. A legalized market would also decrease the dangers of the black market.

Luis Pablo de la Horra is a Ph.D. Candidate in Economics at the University of Valladolid (Spain). He has been published by several media outlets, including The American Conservative, E!Sharp and the Intellectual Takeout, and a few others. CapX, the media company this article was published on, is a right wing politic. It is a British company and that just goes to show that this problem is going on all around the world. This article was published only a year ago, and still stresses its relevance today. Also, it is mostly based on opinion with very few facts.

Introduction:

Bioethics is the study of moral issues it’s often refers to four basic principles of healthcare when assessing the toughness of medical procedure and in order a medical procedure to be considered as an “ethical” it must approvals all the four principles of bioethics these includes: autonomy which means that people have the power to authorise what happens to their bodies and everyone should honor the patient’s determination even if it’s not well-being for them, Justice specifies that when offering medication to patients you should be unbiased and any responses in every circumstance should be competent to rationalize, Beneficence invokes that all healthcare treatments must attempt to improve the patient’s welfare and sometimes not all medications are best for every long-suffering and lastly Nonmaleficence requires that health maintenance should avert procedure that will result in damages to their patient. Therefore bioethical considerations need to be made before procedures can be performed due to this idea improves the observation of the research like knowledge and avoiding Human’s error and the research can be successful if they have faith in the aspect of the investigation.

Section 1: My sister’s keeper

My sister’s keeper is a movie about a saviour sibling who has been created in order to be her sister’s donor who has leukemia, this process is through making Human’s embryos in vitro fertilization. This simply means injecting the mother’s eggs with sperm outside of the body in a laboratory. Once the baby is born the Healthcare maintenance start amassing the cord blood. Later on the bone marrow and even the organs are being taken because it’s suitable match for the recipient. Every character has their own point of view of the circumstance however early in the movie Anna hires a lawyer saying” …[she ] wants to sue [her] parents for the rights to [her] own body.’ this suggests that Anna’s parents are forcing her to be “[her] sister’s keeper” which does not cover one of the four bioethical considerations. Researchers have questions about modifying embryos because they can’t give consent and we see this through the movie Anna always repeats, “Most babies are accidents. Not me. I was engineered. Born to save my sister’s life.Once upon a time I thought I was put on earth to save my sister”. In the yes of everyone she thinks she wouldn’t be created if she it wasn’t to be her sister’s donor which doesn’t cover the bioethical consideration.

Did Sara go to far in this ethically questionable movie? By Isabella TokichPicture here To go with review

Idea: Doctors all over anna stabbing out her kidney and kate is in back, black, watching her suffer, Sarah is next to her smiling

• shows Kate is dark on the inside
• anna forced to do something she doesn’t want to do, sarah smiling shows kate rights seem more important then annas

My Sisters Keeper, based on Jodi Picoult book, poses the question: how much are we entitled to use each other? My Sister’s Keeper is a thought-provoking dramatisation of one of the most troubling ethical issues of the ART (artificial reproductive technology) industry: the creation of “saviour siblings”.

It all began with a bruise: a small innocent bruise. While bathing her two-year-old daughter, Sarah finds a trail of brown bruises running down Kate’s spine, before rushing to an oncologist. Kate’s childhood becomes a whirlwind of specialist appointments, emergency surgeries, and nauseating chemo-therapy sessions since this point, diagnosed with leukemia.

How far are they willing to go to save their little girl? How ethical will these decisions be?

The movie begins with a voice-over by Anna, the “savior sibling”. She knew she was made to rescue her sister. This made her feel second best. Being a savior child, meant that the doctors were able to manipulate Annas genes to make her the perfect match for her sister. While doing this, the doctors would have to create a number of embryos, tested them, and kept the one that matched. Then what happens to the others? They are destroyed. These discarded siblings are not part of the story. Somehow, they never are.

Anna had been Kate’s supply for bone marrow and blood transfusions since she came out of the womb. Now she is asked for something more: her kidney. After 13 years of being an involuntary donor, Anna seeks to obtain control over her own body, even at the cost of her sister’s life.

Anna hires a lawyer to represent her in a suit against her mother. She claims that she wants the rights to her own body, which legally, is extremely valid.

Sarah is astounded by the lawsuit that her teenage daughter has filed against her parents. She has convinced herself that it is morally licit to create a human to force that human to save another. Her father Brian tries to keep up with shift work at the Fire Station, while the rest go his times are trying to put out the metaphorical fires in their household. Kate is sick and tired of being sick and the constant fighting in their family. Anna has had enough of feeling like a human blood bag. Their life is a continuous bash around between what is right for Anna, Kate, and their family as a whole.

Since Anna was created specifically to provide life-saving transplants and transfusions for her sister, was she being coerced and taken advantage of? Now that she’s old enough to know the risks of major surgery, does she have the right to refuse? After all, Anna would likely never have come into existence if it weren’t for her sister’s leukemia. The two sisters owe one another their lives.

Pro-lifers in terms of abortion are often asked whether women have a responsibility to give up her womb to sustain the life of their child. How does the womb differ from a kidney? Well, if Anna refused to give up her kidney, her sister Kate would die from kidney failure. Anna isn’t directly or intentionally killing her sister. If a woman were to electively refuse her baby the safety and sustenance of her womb, the baby would not only be cut off from her life support but would also be cut to pieces in the process. It’s the difference between not being able to save someone who’s drowning, and holding their head underwater.

As the story progresses, the viewer see that the parents really do love Anna. They do realise that she isn’t merely a bundle of spare parts, but a full human being. But the mother, in particular, really does believe she is entitled to direct the use of one daughter’s body for the benefit of the other daughter, although this, is ethically a step too far.

Only the sisters’ love for each other keeps the family from completely disintegrating. Kate wants Anna to live her best life, and is accepting that she must die so Anna can live her life to the fullest.

My Sister’s Keeper keeps this compelling moral question before our eyes, of how much are we entitled to use eachother, and if it is ethically acceptable to genetically modify a cell to create the perfect baby into this life, for medical purposes. It also brings up the question of why isn’t it even more acceptable to just eliminate non-useful embryos before implantation in the womb, which is not even touched on in the movie.

Organ Transplantation and ‘Saviour Siblings’: How Fiction Depicted These Areas Through the Years

Introduction

In the latest years, a new kind of embryo selection has been brought to the public’s attention. Doctors can pick an embryo for implantation which will become a ‘’saviour sibling’’, a brother or a sister that is capable of donating life-saving tissue to an existing child. In England, this practice has been explicitly allowed by the new Human Fertilisation and Embryology Act 2008 under some strict conditions (Madanamoothoo, 2011). There has been significant debate over ‘saviour siblings’ since the birth of Adam Nash in the US in 2000. Adam was the first child reported to have been born using a form of assisted reproductive technology known as Human Leucocyte antigen tissue matching (HLA). Doctors are using HLA typing which in combination with preimplantation genetic diagnosis (PGD) can help them of achieving their goal of creating these siblings (Liu, 2007).

In the UK, the most recent case to reach the courts and the newspapers is that of the Hashmis. Their son, Zain, had β-thalassaemia, a blood disorder which could be cured using tissue from the umbilical cord of a sibling, but only if the sibling is a tissue match. The Human Fertilisation and Embryology Authority gave permission for the Hashmis to select a saviour sibling for Zain. This decision caused a lot of controversy in the courts, with the UK High Court finding that the selection of a saviour sibling was unlawful. In May 2003, the Court of Appeal flipped over this decision, declaring that tissue typing can be authorised under current legislation (Petersen, 2003).

This essay will review the ways biology is depicted within the fictional arts and how this depiction changed over time.

Science behind case study

Preimplantation Genetic Diagnosis (PGD)

Preimplantation genetic diagnosis (PGD) is a relatively new technology to obtain genetic information about embryos before implantation into the uterus. Originally, it was offered to couples at high risk of transmitting a genetic disease as an alternative to conventional prenatal diagnosis, possibly followed by a termination of pregnancy. However, it became clear that the specific technical characteristics of the technology offered new possibilities and led to deviations from the standard guidelines applied to prenatal diagnosis. The most important difference is the availability of several embryos. According to the opponents, this fact is responsible for lowering the indication threshold for selection of the embryos (Testart and Sèle, 1995). A healthy pregnancy is achieved, a possible termination can be avoided, and in certain cases an inherited disease can be eradicated from a particular family. This can lead to the selection of embryos for less serious reasons (King, 1999).

[image: General process of steps required for preimplantat]

Figure 1. General process of steps required for preimplantation genetic diagnosis and preimplantation genetic screening (www.emedicine.medscape.com).

PGD involves the biopsy of blastomeres from in vitro fertilization (IVF) generated day 3 (cleavage stage) embryos, or first and/or second polar bodies (PBs) extruded from the oocyte during meiosis progression, and their subsequent testing with one of two methods, fluorescent in situ hybridization (FISH), or the polymerase chain reaction (PCR) (Wells and Delhanty, 2001). Table 1 shows the different diseases that PGD was applied between January and December 2003, according to the ESHRE data (Sermon et al,2007).

Table 1. Clinical application of PGD carried between January and December 2003 for single gene disorders (Sermon et al, 2007).

Disease

Number of Cycles

Cystic fibrosis 69

β-thalassaemia 53

β-thalassaemia + HLA matching 8

Spinal muscular atrophy 29

Sickle-cell anaemia 9

Huntington disease 90

Huntington disease exclusion 8

Myotonic dystrophy type 1 67

Adenomatous polyposis coli 9

Marfan syndrome 8

Duchenne muscular dystrophy 17

Becker muscular dystrophy 4

Haemophilia 14

Fragile-X syndrome 27

Others 104

Total 516

PGD has been used to enable families to have a child that is a tissue match for an existing sick sibling in need for an allogenic haematopoietic stem cell (HSC) transplantation. HSCs are blood forming cells found in the bone marrow, the peripheral blood and the umbilical cord blood. Bone marrow or blood cell transplantations can be used as a treatment for lethal malignant disorders and for some non-malignant disorders (Benito et al, 2004). How successful a transplant is, depends on how well the HLA types of the donor and the recipient match.

A transplant from an HLA identical sibling is linked to a higher success rate than a transplant from alternative donors (Orofino et al, 2003). All humans inherit half of their HLA type from their mother and the other half from their father. Therefore, each sibling has a 25% chance of being HLA identical to one of his siblings.

The use of PGD is not a necessary condition for creating ‘‘HLA matched donor children’’. Before the use of PGD in assisted reproduction technologies (ART), there had been several cases in which a couple had one or more children, through natural reproduction or IVF, in the hope that those children would be an HLA match for an existing child in need of a HSC transplant. Two such cases were the well-publicised Ayala case in 1993 (Morrow, 1991) and the less well-known Curry case in 1991. Some sought prenatal diagnosis and were prepared to terminate their pregnancy if the fetus was not a match. (Auerbach, 1994)

Preimplantation Genetic diagnosis for HLA: A very promising method for creating ‘saviour siblings’

Preimplantation genetic diagnosis for HLA is a superior method for creating a tissue matched child that can donate stem cells to its sick sibling. The main advantage of this method is that it provides genetic information about embryos prior to implantation and it’s possible to ensure that only those embryos that are a tissue match are transferred to the mother’s uterus. The couple can thus avoid the difficult decision of either terminating the pregnancy if the fetus is not a match or of extending the family, in the hope that the next child will have the desired HLA type (Verlinsky et al, 2001).

Immune Rejection of the Transplant Organs

Rejection of the transplant organs is caused by the immune system identifying the transplant as foreign, triggering a response that will ultimately destroy the transplanted organ or tissue. Long term survival of the transplant can be maintained by manipulating the immune system to reduce the risk of rejection. Therefore, donor and recipient are carefully matched prior to transplantation to minimise the risk of rejection (www.immunology.org).

High demand for organ donors and illegal organ theft

Nowadays, there’s a huge demand for organ donations as 120,771 are waiting for an organ and 18 will die every day while waiting. Figure 2 shows the demand and supply of organ donations between 1988 and 2012. One donor can save approximately 18 lives. Organ donation might be strictly regulated in the U.S but a black market is alive and growing. Typically, a broker will team up with a funeral home director and create consent forms and death certificates to harvest human tissue before the body is buried or cremated. Organs can also be harvested from a living victim for compensation. Worst case scenario can be kidnapping for the purpose of organ harvesting. These organs are sold illegally to someone who is willing to pay an unbelievable amount of money. In some countries, organ harvesting is associated with human trafficking. Moreover, children sold as slaves or sexually abused can be used for their organs as there is a black market for hearts, livers, kidneys and lungs (www.psychologytoday.com).

[image: Αποτέλεσμα εικόνας για organ transplant process]

Figure 2. Demand and supply of transplantable organs in the U.S between 1988 and 2012 (Razdan, 2014).

Alleged use of prisoners as organ donors

Alternative sources for organs for transplantation have been reported or suggested through the last years. One suggestion was the recovery of organs from condemned prisoners. People’s Republic of China was reported to recover organs from executed prisoners. Another proposal suggested that prisoners are given the option of donating organs upon their death, while another suggests that condemned prisoners are offered the option of trading a kidney or their bone marrow in exchange for a reduced life sentence in prison. However, the UNOS Ethics Committee has raised a small number of many ethical issues regarding organ donation from condemned prisoners. The Committee opposes any strategy or proposed law regarding organ donation from these prisoners until all potential ethical issues have been addressed (www.optn.transplant.hrsa.gov).

Fictional examples related with ‘saviour siblings’ and organ donation

Science fiction is often used as a tool enabling thinking about actual science. Science fiction uses the future as metaphor for the present. In doing so, it presents readers with an explorative domain within which present methods and ideologies of science and human experience are examined (Chozinski, 2016). There is a wide variety of fictional works that depict this area of biology.

My Sister’s Keeper (2009)

My Sister’s Keeper is a 2009 American drama film based on Jodi Picoult’s 2004 novel of the same name. The story revolves around 13-year-old Anna, a ‘saviour sibling’ created for her older sister Kate, who suffers from leukemia. PGD screening is used in order to match the tissue of the donor, Anna, for Kate. Anna’s umbilical cord blood is harvested when she is born. As she gets older, she undergoes a series of progressively risky procedures to provide bone marrow and other tissues for her sister. After a remission, Kate’s cancer returns. Kate now needs a donor and Anna’s family assume that she will be the donor. However, Anna is seeking medical emancipation, she decides to hire her own layer, initiating a court case that divides the family and could leave Kate’s failing body in the hands of fate. This film shows the arguments for and against ‘saviour siblings’ in a balanced and fair way. (www.allyouneedisbiology.wordpress.com ; www.phychologytoday.com ; www.rsrevision.com)

Parts: The Clonus Horror (1979)

Parts: The clonus Horror (also known as Clonus) is a 1979 science fiction horror film about an isolated community in an unknown desert area, where clones are developed to be used as a source of replacement organs for the powerful and wealthy, including an upcoming president-elect. The clones are kept isolated from the real world but are promised to move to America after the completion of a physical training. After a group of clones are chosen to move to America, they’re given a celebration party. Then, the clones are taken to a lab where they are placed in plastic bags and their bodies are frozen in order to maintain their organs for harvest (www.tvtropes.org).

The Island (2005)

The Island is a 2005 American science fiction thriller film that is set in the near-future year of 2019 within a sterile futuristic facility in which behaviour-controlled men and women are contained without access to the contaminated world outside. The only remaining clean spot on Earth is ‘The Island’, a utopian area, where winners of a lottery are sent to repopulate the planet. Lincoln Six-Echo, a resident of ‘The Island’, discovers restricted areas of the facility and the truth. There is no island, there is no contamination and lottery winners are actually clones whose only purpose is to provide ‘’spare parts’’ for their original human counterparts. Realizing it’s only a matter of time before he is ‘’harvested’’, Lincoln tries to escape with one other clone resident and meet their makers (www.filmjabber.com ; www.horrornews.net).

Never Let Me Go (2010)

Never Let Me Go is a 2010 British dystopian romantic drama based on Kazuo Ishiguro’s 2005 novel Never Let Me Go. It times back to 1990s where the lives of ordinary citizens are prolonged through a state sanctioned program of human cloning. The clones, referred to as students, grow up in special institutions far away from the outside world. They begin to donate their vital organs as young adults. All these donors receive care from nominated ‘’carers’’ that are clones who have not yet begun the process of donation. The clones keep donating until they ‘’complete’’ which is a euphemism for death after the donation of three or four organs. However, the hypothesis is not immediately clear to the audience (www.sparknotes.com).

Depiction in fictional works of organ donation

Over the years, several films have dealt with the subject of organ transplantation, highlighting different aspects of it. Some films have been made as comedies while others have shown the negative side of it. Films have presented truths and myths about organ donation.

Era I (prior 1990s)

In this Era, films on organ transplantation portray the negative side of the transplant surgeons who are motivated by tragedies in their personal lives for example accidents, in which their wives have died or been physically disabled such as in ‘The Awful Dr. Orloff’ (1962) and ‘The Brain That Wouldn’t Die’ (1962). Depictions like these are often brutal and gory. Most of these films deal with the brain and head transplantation and follow a horror or thriller route. They show that psychosis is a common outcome of the transplant procedures where the recipient turns into a monster, underlining the negative outcomes of transplants in the recipient. It is commonly known that the adjustment after the transplant operation is quite stressful, but psychotic outcome is not necessarily a present phenomenon. ‘The Man with Two Brains’ (1983), is a comedy and the only film of this era that shows transplant in a positive way.

Era II (1990-2000)

Films from 1990-2000 were influenced by heart transplantations and the emotions that arise afterwards. Most of these portrayals were negative apart from films like ‘Return to Me’ (2000) which shows how someone can get deeply involved with this procedure as the heart is associated with love and loyalty. However, ‘Face Off’ (1997) portrayed the negative impact that face transplantation can have in the lives of those involved as face is a vital part of the identity of the individual.

Era III (Post-2000)

Films that belong in Era III show the organ transplantation in great detail as the sophistication of the transplant procedures increased and a wider variety of organs are transplanted. Films are engaged in areas like family dynamics, consent issues and organ black market (Karla and Bhugra, 2011).

Moreover, much of this recent fiction has sought to assert again the humanity of donors. In the novel-turned-film Never Let Me Go (2010), questions arise about the lives and self-definition of organ donors in a dystopian future. (Chozinski, 2016).

Therefore, films have evolved in their depiction of organ transplantation both in quality and quantity. Nevertheless, it’s important that this area is portrayed in a responsible way and shows the positive side and the necessity of donating organs.

Science fiction and Reality

Science fiction is a genre that has been successfully predicting future technologies. Many of the technological achievements in the last decades were ideas prior described in science fiction literature before they became a reality (www.inc.com)

Some of the most innovative ideas came from people who had little to do with science and technology, but they imagined future worlds without the limitations of the present moment.

Several films and novels have accurately predicted and paved the way for many of the pieces of technology we enjoy today. Design fiction, a new method for designing technology, has recognised the value of science fiction. Design fictions are interesting and engaging to people, encouraging them to imagine, explore and raise questions about the future technology and society. Therefore, science fiction or what the design world refers to as design fiction, isn’t fiction but a technique to envision, thinking ahead about the future and creating debate by asking what if (www.theguardian.com).

Moreover, science fiction provides the means for developing ethical guidelines that might become applicable in the foresight future. Science fiction not only tries to prevent negative developments, but it also tries to stimulate positive trends (www.dw.com).

However, science fiction still portrays areas of science for which our knowledge is limited or none such as life in other planets or superhumans. Moreover, some films or novels are simply a source of creativity and are not based on actual science.

In the future, when more knowledge will be gained about areas of science that are still unknown, fictional works may be more realistic and could be used as great examples to bring people in touch with science.

Conclusion

‘’Fiction’’ is a great way to depict science through fictional works. Several films and novels portray the area of organ donation in great detail and show sides that were unknown to the average audience until that moment such as preimplantation genetic diagnosis and human leucocyte antigen typing used for creating ‘saviour siblings’. Depiction in fictional works of organ transplantation changed significantly over time in both quality and quantity as more knowledge was gained.

However, it’s still not feasible to portray complex areas of biology with accuracy through fiction as more knowledge or fantasy is required for accurate representations.

In the future, fiction is expected to portray new areas of science that were unimaginable until that time.

References

1. Auerbach, A.D. (1994) ‘Umbilical cord blood transplants for genetic disease: diagnostic and ethical issues in fetal studies’, Blood Cells, 20(2-3), 303-9.
2. Bay, M. (director) (2005) ‘The Island’, DreamWorks Pictures, USA.
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“My Sister’s Keeper” is a movie released on 26 June 2009 directed by Nick Cassavetes. The cast of the movie included Sofia Vassilieva as Kate Fitzgerald, Abigail Breslin as Anna Fitzgerald, Evan Ellingson as Jesse, Cameron Diaz as Sara Fitzgerald, Thomas Dekker as Taylor Ambrose, Alec Baldwin as Campbell, Joan Cusack as Judge, Heather Wahlquist as Aunt Kelly, Jason Patric as Brian Fitzgerald.

“My Sister’s Keeper” is a movie based on a story in which Sara and Brian Fitzgerald are having three children, Kate Fitzgerald, Jesse Fitzgerald and Anna Fitzgerald. Kate Fitzgerald was suffering from Acute Promyelocytic Leukaemia who needed frequent transfusion. Anna Fitzgerald who was 11-year-old girl was genetically designed as a source of organs for her dying 16-year-old sister (Kate Fitzgerald) through in vitro fertilization which assured a perfect match for transfusion of granulocytes, lymphocytes to Kate. Because of transfusions from Anna, Kate’s life was prolonged but her kidneys had gone for a failure. Sara wanted Anna to donate her kidney to Kate. Anna didn’t want to donate any of her body parts anymore and she also wanted medical emancipation so that she can be the owner of her own body. Anna also didn’t want her parents to make medical decisions for her without her consent. In the midst of the proceedings, Anna confessed that Kate instructed her to file medical emancipation case as Kate wanted to die.

The story:

Kate’s illness:

The couple Sara and Brian Fitzgerald were a happy family with two kids Kate and Jesse Fitzgerald until Kate was diagnosed with Leukaemia at the age of 2. This was a terrible blow to the family. So, Kate required frequent transfusion of granulocytes, lymphocytes and so on.

Sara was a lawyer and Brian was a fire engineer. Sara had left her job and was more involved in taking care of Kate. Kate would be very frequently ill. Sara would also cook organic and steamed food for the benefit of Kate. Kate stole all the attention of her parents. Jesse, Kate’s younger brother felt left out.

Birth of Anna:

The couple were advised by doctors to plan for a third child through in vitro fertilization which will have the same set of genes as that of Kate and would be a genetically designed baby to donate organs for Kate. The doctor was of the opinion that the umbilical cord blood would do wonders for Kate.

The saviour of Kate:

Anna Fitzgerald was their third child brought into this world with a definite purpose, to be Kate’s saviour. So, Anna was the donor baby.The doctors initially thought cord blood from the saviour sibling, Anna would be of great help to Kate.But Kate needed more and more transfusion of granulocytes, lymphocytes. Anna Fitzgerald loved Kate a lot and so she agreed to donate WBCs and bone marrow.

As the days passed by, Kate fell sick and her leukaemia had progressed and her kidneys had failed. The only hope was a kidney transplantation from Anna. Anna by now had been hospitalized 8 times for donating white blood cells (granulocytes), lymphocytes, bone marrow transplantation and so on.

Anna filed for medical emancipation:

Anna who was 11 years old then, didn’t want to donate her kidney to her older sibling, Kate. Anna didn’t want to do it anymore. She decided to sue her parents for the rights of her body. Anna met lawyer Campbell Alexander for the same. Campbell Alexander was a little surprised initially but after going through the hospital records, he decided to support Anna and filed a case of medical emancipation against her parents in the best interest of Anna. Campbell Alexander also made sure that Anna is aware of the fact that Kate will not survive if Anna does not donate her kidney to Kate.

Kate was sick again, this time a little more serious and was hospitalized. All the family members were in the hospital. Anna’s parents got the notice filed by Anna. Sara asked Anna why she had filed a case against her own parents. Anna told her parents she didn’t want to do it anymore. Sara tried to convince Anna a lot, but Anna was not ready to donate her kidney. Sara slapped Anna.

Later Anna told her family members that she was advised by doctors to be careful once she donated her kidney to Kate and that she wanted to party out, and enjoy life, which she couldn’t do after donating a kidney. She didn’t want to be careful. Anna also feared that Kate may also not survive after renal transplantation.

Anna shifted out:

Brian took Anna out for a party and Anna enjoyed a lot in the party. Brian started to wonder from when she started taking decisions of her own and he began to realize himself that it was probably from then. Brian later tried to convince Sara that Anna didn’t want to donate any more. He was also afraid that if she was forced to donate, she may think she was getting used up. Brian didn’t support anybody and was depressed. Anna after moving out of the house stayed in the firehouse.

Sara met Campbell Alexander and told him that the legal age for filing medical emancipation case was 14 years in the state of California and Anna was only 11 and that she can’t file a medical emancipation case. Sara also conveyed him that Anna was just trying to help her sister out and she was well aware of it. Campbell said he was only helping Anna out and he didn’t not have any other interest.

Kate at home:

Kate would be lying in bed and would have not gone out from past few days. Her family members convinced her to go out. Kate said she was sick, tired and ugly (because she has shaved her hair) and couldn’t make friends outside. So, her mom also shaved her hair off. Then Kate with her family members went out and enjoyed a lot.

Kate in hospital:

Kate would be receiving platelets to boost her immune system, in the hospital and will be remission phase. Kate met Taylor, a cancer patient in hospital. Taylor would be undergoing chemotherapy there. Kate and Taylor fell in love and they started dating. Taylor said Kate that he was glad to be sick because if he didn’t have cancer, he wouldn’t have found Kate. Few days later Taylor died..

Kate felt nostalgic:

Kate knew she would die. She felt depressed that the disease is also killing her family. Kate felt she stole everybody’s attention. Jesse was sent to boarding school in childhood because his parents were busy taking care of Kate. Kate felt sorry for Jesse because she deprived Jesse of parent’s love and attention. She felt sorry for her dad also as she stole his first love from him. Her mother gave up everything for Kate, her work, her marriage and her entire life. So, Kate felt sorry for her mother also. Kate felt sorry for her little sister as she let them hurt her and she didn’t take care of her.

Jesse:

Jesse had not been handling Kate’s diagnosis well. He started drinking and using drugs. Jesse began to steal and got into arson. Jesse kept wandering.Jesse loved his sister,Kate so much that he was depressed with Kate’s illness.He made Kate’s painting and gave her in the hospital. Kate felt happy that her brother Jesse cared so much for her.

Sara met Joan:

Campbell and Sara met Joan in the court. The judge, Joan, who had lost her child in a car accident caused by drunken driving, assigned Anna to stay with a guardian named Julia Romano, who also knew Anna’s lawyer, Campbell.

Kate in terminal stage:

Dr. Chance talked to Sara and Kate and told them that Kate had very little time. Sara was quite hopeful of getting kidney transplant done for Kate. Dr. Chance asked Sara as to how that was possible as Anna was not agreeing for it. Make a wish people and Dr.Chance convinced Sara to take her home and spend some quality time with her as nothing much can be done then. They explained to Sara that death was a normal process of life.

Sara left no stone unturned for the case filed by Anna against her own parents.

Kate wanted to go to the beach with her dad, Anna and Jesse. Her mom would not agree. But still they all went to the beach. At the beach Kate felt too good and sang “this moment meant a lot to me, felt like home to me”. Later her mom and aunt also joined her. Kate reached hospital.

Court Proceedings:

In the court, Anna wanted to be in charge of her own body. Campbell questioned Sara whether Anna was asked when her lymphocytes and granulocytes were transfused to Kate or bone marrow aspiration was done on her. Campbell even asked her if she knew how big needles are inserted for bone marrow aspiration. Sara agreed that from Anna’s point of view it was brutal. But Sara felt Anna was just helping out her sister and nothing else.

In the midst of these proceedings, Jesse revealed in front of everybody in the court why Anna had filed this case. The reason behind Anna filing this case was that Kate didn’t want Anna to donate her kidney and Kate wanted to die. The judge Joan wanted to talk to Kate in the hospital and then gave her judgement.

Death of Kate:

Back in the hospital, guests came to see Kate and later guests and family members left. Her mom Sara stayed back with Kate. Kate gifted her mother a photo album that she made especially for her and explained to her, as to why she wanted to die and that same night Kate died.

Few days later, a surprise visitor Alexander and his dog (Judge) visited Anna at her home. Anna had won the case, so he had got her the court judgement. Anna was officially medically emancipated.

Later things change. Sara got back to her work as a lawyer. Brian started counseling troubled university youth. Jesse was back in school and later ended up becoming a police officer. The entire family went out for a vacation to the same beach where Kate came for vacation.

Kate had to die and they all got to live. Anna always felt she had the most wonderful sister ever and their relationship continued.

I want you to close your eyes, and tell me. Tell me- how you would feel.

How WOULD you feel?

If you learned that the only reason you were born was to save the life of another.

That you ARE- and always will be- the second choice.

That your parents have, to the objective standards of society/loved your sibling more than you, before you were even born.

Before they even had the chance to get to know you.

That you were conceived solely to save your sibling who was born out of love

What Saviour Siblings are

Sadly, this is the hidden reality for many babies known as saviour siblings. It’s all they’ve ever known. To them, that is their norm: to them, it’s perfectly fine. So, what are saviour siblings? In a nutshell, saviour siblings are children that are conceived with the purpose of providing medical relief for an older sibling diagnosed with terminal illnesses such as leukemia, cancer or Fanconi anemia. It refers to the use of pre-implantation genetic diagnosis (PGD) and other forms of in-vitro fertilization (IVF) in order to create a sibling for the purpose of providing biological material (bone marrow, blood, etc.) that can help treat or cure an existing terminally ill child.

conceived by artificial insemination on top of the selection of an embryo based on its blood, has sent new flames into the hot parliamentary debate over the reform of bioethics law.

The child’s deliberate embryonic selection rested on it not having the gene for beta thalasaemia, and its birth potential to help cure beta-thalasaemia suffered by two older siblings. Theoretically, the use of ‘saviour siblings’ has been allowed since 2006, when the 2004 Bioethics Law and associated decrees was passed. The USA has utilised this for about ten years, but such a birth is rare in Europe – and, depending on the results of a current debate, might become even rarer in France.

My Argument

Today, I am going to tell you about the ethical issues concerning living organ donation among minors, and why assent should be made illegal – allowing only the child to be able to give consent to live organ donation and other invasive procedures once they reach the legal age of 18. Essentially, this means I believe donating blood and other minor procedures are acceptable, however major invasive procedures such as organ transplants which pose lasting implications and greater risks to the saviour sibling and no direct benefit to them whatsoever, should simply not be allowed, regardless of a case by case basis.

My Sisters Keeper

There is a book with a movie adaptation , “My Sister’s Keeper by Jodi Picoult”, entails the story of a young girl suing her parents for emancipation as she doesnt agree to donating one of her kidneys to her terminally ill sister. The movie opened my eye on this issue which is given such little attention. It opened my eyes to the hidden world of injustice enveloped behind the mask of a happy, interdependent family. Of how innocent children have, either intentionally or unintentionally, been brainwashed and conditioned to believe, since birth,that their sole purpose in life is to help their sibling. And they do not question it, they never question it, for it’s the people they love most and hold dearest to their heart that have led them to believe this,

That needs to change.

RISKS & Severity of procedures

umbilical cord & blood transfusions are fine but transplants etc pose risks to saviour sibling that could result in death, no medical need for themselves to undergo a procedure (legal guidelines 16 or 18 to donate) , ANESTHESIA., Graft-versus-host disease (allogeneic transplant only), Stem cell (graft) failure, Organ damage, Infections, Cataracts, Infertility, New cancers, Death

Psychological effects it has on the child

Case study the Whittaker family: jamie and charlie in uk – charlie had anemia, when jamie was born, took his umbilical cord, no invasive procedures – at 3 years old, he told in an interview that jamie knew he was born for charlie, to save charlies life , what are the implications on development of child knowing that, most of us have a n individual sense of identity or live for ourselves, when young, you don’t know your life purpose, you find out and learn as you grow, its that search thats integral to development how would you feel forms a large part of our adult identity. Imagine knowing immediately that your purpose is set for you , telling someone what their purpose if just isn’t right , your purpose was decided before you were even born, no matter what you do, you born for the sole purpose of saving another sibling

• This has major psychological impacts on a child, leading them to possibly view them as an asset, a handy tool, rather than an established and valid family member
• Ability to make decision or grant informed consent on subject of organ donations, lack of autonomy
• Can only drive or smoke or drink but can have your organs taken from you before that family pressure when the intended recipient is a close relative of the minor donor
• Take away the need for emancipation

Even if they agree, due to major pressure from family SINCE BIRTH, sense of obligation, “their responsibility” to save their siblings life whm they love and if they dont they feel bad and guilty

Ethical issues surrounding the conception or perfection of saviour siblings

As they are to be donors to their sibling with illness, parents need to ensure their saviour child is compatible biologically to their existing child, and doesn’t have any genetically inherited diseases or the like. They do this by selecting an embryo out of the many they have created, to conceive the child via in-vitro fertilisation. However, this means the rest if the embryos will get destroyed, and essentially, killed because they weren’t perfect enough. This comes down to a debate similar ot that of the right to aboriton, Discovery of embryos – abortion aspects . As the Late term abortion – dont want baby if it doesnt match, aborts a fully formed baby.

Ending

There has been little meaningful discussion about savior siblings in bioethical or legal circles, and there is no formal regulation governing their use or creation in the United States. This stands in stark contrast to other countries, particularly England, France, and Australia, where a regulatory framework for the use of savior siblings has arisen along with debate over their acceptability. These countries are already discussing how to ethically deal with this extremely complicated issue.

I believe this is vital to the psychological and also physiological aspects of the saviour siblings development. Assent is when parents override or give consent on behalf of their saviour child to donate the likes of bone marrow, skin, organs such as the liver and kidney, and so forth. Most of these saviour kids are too young to even grasp the idea of organ donations or transplants. They cannot comprehend the true risks associated with it! Therefore they cannot make a truly informed decision about these more invasive procedures. Even if they were to give consent, it should be made illegal if they are under the age of 18 as their decision would likely strongly be affected by the [pressure from the family, since birth, and the love between one another causing them to overlook the risks and complications of transplant surgeries. A child shouldn’t need to sue for emancipation to gain control over their body. And what if when they grow up, they want to retract, go back, want their organ back. Because it was unwillingly or unwittingly, essentially, taken from them without their full informed consent. Saviour siblings have essentially been manipulated and brainwashed since birth and that’s probably why there hasn’t been much uproar about it, not much news about it- when i googled this topic, most of the articles were from 2004! So little thought goes into protecting the mental and emotional states of these children and its time we stopped that. Saviour siblings, heroes but not by choice, the name doesn’t stand true to their treatment, in reality they probably feel like a second choice and will impact their self esteem, dignity, honour as a human being and so on.