Organ Transplantation and Saviour Siblings in My Sister's Keeper

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).

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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.

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