Saviour Siblings

Venaya Binwani

Theme: Ethics and controversy

A couple of weeks ago, I read the movie adapted novel ‘My sister's keeper’ by Jodi Picoult, which deals with the highly complex theme of saviour siblings. A saviour sibling is born from an embryo that has been selected using PGD (preimplantation genetic diagnosis) via IVF (in vitro fertilisation), to act as a stem cell, bone marrow or organ donor for their sibling with a specific medical condition. The reason they are conceived this way is to ensure that they have ‘matching’ genetic material to their sibling, which is identified by their Human leukocyte antigens - a type of surface protein on the membrane of organs and cells, thus allowing them to act as blood/organ donors. [1]

In the novel, Kate is diagnosed with Acute Promyelocytic Leukemia at the age of 2 and her sister Anna, is conceived to donate her stem cells which will keep her sister alive. When her parents request a kidney from Anna, she decides to sue her family for medical emancipation, no longer wanting to act as Kate’s life support machine after 13 years of doing so - but the reason behind this is much more complicated (and spoiler-filled) than I can share. Throughout the book, we learn more about the family’s experience with cancer and how they have all coped with such a difficult circumstance. It was truly an amazing read and I would highly recommend it to anyone interested in a book that deals with complex themes such as medical ethics and familial relationships. [6]

Anyways, the book got me thinking about my own perspective on saviour siblings: ‘is it right to conceive a child just so that you can save another?’. Usually, a saviour sibling is conceived because the umbilical cord blood can be extracted once their born, and be used as a last resort means to save their sibling.[1] However, what happens when one blood extraction becomes two, and two becomes three and then the next thing you know, you’re being wheeled into surgery to give your sister your kidney? Being checked into the hospital every time your sibling is, despite being perfectly healthy, is another factor that may interfere with a child’s wellbeing and hinder them from experiencing a ‘normal’ childhood (as far as growing up with a cancer sibling can allow) . You could argue that someone would not be against such a sacrifice if it meant keeping their sibling alive, but does this unethically compromise the welfare of the saviour sibling themselves? [2][3] 

In terms of mortality, research would suggest no, as procedures such as bone marrow extractions and kidney transplants are relatively low-risk procedures. [3] However, this does not mean that they come without physical harms to the donor, as they can lead to side effects such as sleep problems, fatigue, headaches, difficulty walking and nausea, not to mention how painful the procedure is itself. [4]

In addition to this, research suggests that there are a myriad of psychological factors that need to be taken into account, and the risk this opposes on the mental health and wellbeing of the child. Wendy Packman from Pacific Graduate School of Psychology says that saviour siblings could experience poor peer relations, anxiety and depression and low self-esteem, which may be amplified, should a transplant or procedure be unsuccessful. Being a saviour sibling may put a lot of pressure on a child, and they may blame themselves if they’re unable to fulfill the role they believe they were conceived for. This also leads us to consider the effects of knowing that one was conceived as a means to save someone else, rather because they were wanted for themselves. Packman suggests that this could cause a child to have poor ‘self-concept’, which may make it difficult for them to discover their purpose and identity, all of which may contribute to low self-esteem and increase the risk of mental health conditions. However, the real life cases of Ayala Marissa and Jamie Whittaker would indicate otherwise. Saviour sibling Jamie Whittaker, says “I think I feel both good and bad about it but more good than bad...I know I was born [to save my brother] instead of being just born for me...it makes me feel close to Charlie...I also know Mummy and Daddy want me and love me and always wanted a big family.” Ayala also shared how she and her sister had a good relationship throughout their lives and how they lived by the idea that neither of them would be alive without the other. [1] [2]

We should also consider the instance where a single cord blood transfusion has the potential to treat an elder sibling, without requiring an invasive procedure or long time risk to the saviour sibling. Not only does the family get to save their eldest child, but can also  welcome a new member to their family. Whether there are real life examples of this are unclear, however, this could explain why certain governing bodies such as the HFEA (Human Fertility and Embryology Association) in the UK, look at saviour siblings on a case by case basis - potentially as a way to measure the risks depending on the condition of the child. [4]

Finally, we could consider the action of conceiving a saviour sibling and whether this is morally or ethically correct in itself, despite the consequences it may have. Emmanuel Kant, who was a philosopher, believed in the moral deontological perspective; actions themselves can be categorised as either good or bad regardless of the consequences they have. [5] He said ‘never use people as a means but treat them as an end’ - as in don’t have a child to serve the purpose of another child, if you're not going to have them for their own sake. However, you can argue that there are many circumstances in which there is a breach in this ethical code; in other words, there is more than one way to conceive as a means to an end, like saving a marriage, having an heir, giving your parents a grandchild or creating a playmate for a sibling - so in this ethical context, what is the difference should the child be created for a medical purpose? [3]

Alternatively, we could consider the perspective that regardless of the action or the consequences, conceiving a saviour sibling commodifies a human being. [3] This is a moral dilemma that doesn’t have a straightforward answer, and attempting to answer it may lead us to question the actual purpose of being a human itself - which would make this article much longer than either of us want it to be. However, to give you a summary of my take on the matter, I would say that each case is different and the purpose of a saviour sibling for one family may differ to another. If a cord blood transfusion would be the first and last time the baby would be used as a source of spare parts, then I would assume that the pros of the outcome would outweigh the cons. However, if we’re looking at a child with leukemia, it is unlikely that one bone marrow transplant would cure the illness, and therefore puts our saviour sibling at risk of psychological or physical harm in the future. 

With places like the USA having no regulation whatsoever in terms of saviour siblings, it’s important to understand how such a life-changing decision can impact an entire family, and consider the best ways to make such ethically ambiguous decisions. [4]

Bibliography:

PGD (preimplantation genetic diagnosis): a type of genetic testing that allows us to identify certain genes and traits in embryos created through IVF. This is usually done to check for any severe genetic disorders, or in the case of saviour siblings, a specific type of surface protein.

IVF (in vitro fertilisation): A form of conception that involves extracting human sperm and egg and fertilising them in a lab, before implanting the embryo into the mothers womb, to grow into a fetus.

Stem cell: the unspecialised cells in our body that can develop into any kind of bodily cell, depending on what our body needs. For example if you get a cut, your body will need to replace your damaged skin cells, so these stem cells will differentiate into skin cells to heal the wound.

Bone marrow: spongy tissue inside of your bones that produces stem cells

Human leukocyte antigens: a kind of surface protein that appears on cell membranes, and acts as a signal to the immune system that this kind of cell is not a foreign or harmful organism that needs to be removed. Therefore it is important for stem cell and organ donors to have the same surface proteins, so that the immune system doesn’t destroy these cells after the transplant

acute promyelocytic leukemia: a kind of leukemia (blood cancer) that results in the formation of too many immature promyelocytes (a kind of blood cell) which hinders the production of normal white blood cells, red blood cells and platelets.

References:

1. Mills. J et al 2013. UNDERSTANDING THE POSITION OF THE SAVIOR SIBLING: HOW CAN WE SAVE LIVES AND PROTECT SAVIOR SIBLINGS? Wake forest University

2. Saving Savior Siblings. n.d. How Are Savior Siblings Affected?. [online] Available at: < https://savingsaviorsiblings.weebly.com/how-are-savior-siblings-effected.html > [Accessed 25 July 2020].

3. Spriggs, M., 2005. Is conceiving a child to benefit another against the interests of the new child?. Journal of Medical Ethics, 31(6), pp.341-342. 

4. Zúñiga-Fajuri, A. 2018. Born To Donate: Proposals For “Savior Sibling” Regulation In Latin America. [online] Scielo.org.co. Available at: < http://www.scielo.org.co/scielo.php?script=sci_arttext&pid=S1657-95342018000300228 > [Accessed 25 July 2020]. 

5. Csus.edu. n.d. KANTIAN ETHICS. [online] Available at: < https://www.csus.edu/indiv/g/gaskilld/ethics/kantian%20ethics.htm > [Accessed 25 July 2020]. (kant)

6. Wikisummaries.org. 2016. My Sisters Keeper Summary At. [online] Available at: < http://www.wikisummaries.org/wiki/My_Sisters_Keeper > [Accessed 25 July 2020].