The novel “My Sister’s Keeper” by Jodi Picoult explores the medical, legal, ethical and moral issues related to long term illness and discusses some of the bioethical issues around the experimental technique known as pre-implantation genetic diagnosis. The author presents many ethical dilemmas when a couple chooses to genetically engineer a baby to create a bone marrow match for their terminally ill daughter. That creation is Anna Fitzgerald, who is beginning to wonder about her place in the world and questions her on going donations in order to save her sister’s, Kate’s life.
Anna feels that her existence is defined by her ability to save her sister. That type of knowledge of such form of conception must have some sort of psychological ramifications upon a growing child. If I knew that I was a test tube baby, it would make living a little less extraordinary because it takes away the romance of creating life. Anna lashes back at her parents who conceived her out of desperation by suing them for medical emancipation, which are medical rights over your own body. She wants the right to be able to say no to invasive medical procedures, even if it might mean the death of her sister.
The author tackles genetic engineering by posing a question: If you use one of your children to save the life of another are you being a good or bad parent? The dilemma here is if you use your child to save the life of an older sibling then you are not being a good parent, if you do not genetically engineer a saviour sibling then the older sibling will die. Either use your child to save a life or do not. So either the older sibling lives or dies. This paper will explore this moral dilemma, using the issues presented in “My Sister’s Keeper”, by Jodi Picoult.
Firstly, being a donor sibling affects relationships with other members of the family and the best interests of the child. Secondly, the welfare and consent of the ongoing use of such children as donors can become the deciding factor of life for the child being saved. Lastly, knowing one is a saviour sibling affects the child’s experience of life, and their social and psychological development. The first bioethical issue is whether or not in vitro fertilization (IVF) of an embryo for the use of saving a life, is in the best interest of the child being born. The novel “My Sister’s Keeper” examines whether or not it is in
Anna Fitzgerald’s best interests to be born as a life saver for her sister Kate. It is arguably in any child’s best interest to be born rather then not being born, and a Utilitarian would say that Anna being born is doing the greatest good for the greatest number because it would benefit Kate and the family. To conceive a child by IVF in order to meet specific genetic requirements is unethical unless its purpose is to save a life. There is a moral difference between selecting for socially desirable traits like blue eyes and blonde hair, and selecting for medically desirable ones.
Anna was genetically engineered as a perfect donor match for her older sister Kate. “We thought it might be a good idea to see if another sibling of Kate’s matched up. The reporter asked, another sibling who doesn’t exist? Not yet Brian replies. What made you turn to a geneticist? Time constraints Brian answered. People seem to think that we’re trying to make a designer baby. Aren’t you? We didn’t ask for a baby with blue eyes, or one that would grow to be six feet tall, or one that would have an IQ of two hundred. Sure, we asked for specific characteristics-but they’re not anything anyone would ever consider to be model human traits.
They’re just Kate’s traits. We don’t want a superbaby; we just want to save our daughter’s life”. (Pg 102-103). On television Brian denies that he and Sara are trying to have a designer baby because Anna is alive because she can save her sibling’s life. I agree with Brian that there is a moral difference between selecting for socially desirable traits and selecting for medically desirable ones. Socially desirable traits would presumably be for the benefit of the child, whereas in this case, the medically desirable traits are for the benefit of another person.
However I feel that Brian and Sara forgot to focus on what could be better for Anna when the time came for her to live her own life. At first Anna was experiencing psychological altruism which sometimes motivated her to put Kate’s interests ahead of her own. As Anna grew older she realized that the donations were at her own expense and she wanted to be free. Everyone, including children has the right to act in one’s own best interest. Therefore if Anna felt that she was not living to her best ability because of her connection with Kate then this egoism should be respected.
This contrasts her mother, Sara’s psychological egoism, because she was acting in her own interests to save Kate. In this case, what Sara finds acceptable for Anna is negligent against Anna’s autonomy. The character of Sara is most adamant that it is in Anna’s best interests to act as a donor for Kate. However I do not think she meant for Anna to be at the mercy of her sister. I think she was only intent on doing what had to be done to keep her family intact by preserving the life of Kate. Sara believes that the social, emotional and psychological best interests of a person depend upon the happiness in the family in which they grow up in.
This gives the idea that Anna’s best interests and welfare are closely tied to those of her family, who would be devastated if Kate dies. However it is not only Anna’s social, psychological, and emotional best interests that are at stake, it is also her physical wellbeing as is shown in the following exchange between narrator Campbell Alexander (Anna’s lawyer) and Dr Chance (Kate’s doctor): “This kidney donation – are there risks associated with the procedure? ’ No more than for most surgeries, Dr Chance says. Could Anna die from complications of this surgery?
’ It is highly unlikely, Mr. Alexander. How will having a single kidney affect her for the rest of her life? Increased chance of hypertension. Possible complications during pregnancy. Dr Chance glances up. Donors are advised to refrain from contact sports to eliminate the risk of harming their remaining kidney. I clasp my hands behind my back. Did you know that Anna plays hockey in her free time? He turns towards her. ‘No. I didn’t. She’s a goalie. Has been for years now”. (Pg 336) This passage shows us that Anna’s life will be affected by the donation of a kidney to Kate.
Dr Bergen, a member of the ethics committee reviewing Kate’s treatment, gave a testimony suggesting that when the committee considered whether or not Kate should have the transplant, they were split as to whether or not it was in her best interests. He says that Kate’s condition may have deteriorated to such a point that the operation may do more harm than good. “Anna would undergo a serious operation for no reason at all”. (Pg 305) This leads to the question about the ethical acceptability of Anna’s previous donations. Anna’s first donation of umbilical cord blood turned into a slippery slope of a succession of invasive donations.
As illustrated in court (pg 326-327), Anna donated lymphocytes 3 times, then bone marrow and blood stem cells that resulted in painful needle sticks and bruising. Dr. Chance suggests that even though she has not suffered “significant medical harm from these procedures”, (Pg 336) the discomfort suffered by Anna clearly affected her welfare. Therefore, is it acceptable that one child must suffer a small disadvantage in order to help a sibling? It depends upon the extent to which the small disadvantage lasts. Does it end when the genetically engineered child says so? Or does the child’s autonomy not matter?
The issue of autonomy is one of the central bioethical issues presented in Picoult’s “My Sister’s Keeper”. Competency is having adequate ability or legally qualified to function, develop and respond in a particular way. “My Sister’s Keeper” focuses on who could and could not give consent on behalf of a non-competent minor. I believe that children under the age 12 are not capable of providing competent consent for medical procedures, so their parents consent is used as a proxy. However, the parent’s ability to decide on their child’s behalf to a non-therapeutic medical treatment may not be in the child’s best interest, as explained before.
Brian and Sara have different ideas about whether they should ask Anna to donate a kidney. One example of this is when Brian tells Sara that he is effectively withdrawing consent for Anna’s kidney donation. “Sara says, that Anna is really going through with this hearing on Monday, then I need to review your testimony. Actually Brian says, I’m going to speak on Anna’s behalf. Sara believe me, I’ve thought long and hard about this one. And if Anna’s through being a donor for Kate, we’ve got to respect that. ” (Pg 259) I believe that it would be more acceptable for Brian and Sara to ask more of Anna if they treated her differently.
If they allowed Anna to be somewhat free from her sister she would have been more willing to donate a kidney. “You let Kate go to sleep away camp when she was my age, the one for kids with leukemia, Anna says. Honey you can’t do this. But it’s not now, it’s not till next summer Anna says. And Kate might be dead then. Sara says”. (Pg 268) If Anna’s parents let her do the things she enjoys, like going away to summer camp, then maybe Anna would have not felt the need to become free form Kate so soon. The mother clearly is putting one daughter over another.
However I cannot be mad at her because I can feel why she does not want to let Anna go. Death always takes priority and in the mother’s eyes Anna is only here to save Kate. Therefore, knowing this would make it hard for any mother to let Anna go to camp and risk the other child’s life. “It is the first time I can remember Anna ever indicating that she sees an end to this time line, a moment when she might finally be free of obligation to her sister. Going to Minnesota is not an option. Not because I am afraid of what might happen to Anna there, but because I am afraid of what might happen to Kate while her sister is gone”.
(pg 269) The philosopher, Kant believed No action could be counted as moral if there were no freedom. It is morally wrong to think that you can use someone to the point of no return. Eventually that individual will get frustrated because they do not have a say in some of the occurrences of their life. This applies to the single rule theory of Kantian Ethics, saying that a person should always be treated as ends in themselves and not as a means only. In other words, do not treat people like objects to further your own interests. Sara was using Anna for her own ends dismissing the fact that Anna might want to start living for herself.
In the novel, Anna Fitzgerald’s court case is about whether or not she is capable of giving or refusing to give consent for the donation of one of her kidneys to Kate. Most organ donors I know of are older than 18. In my opinion there should be a legal minimum age for organ donation and the right to refuse, even if there is parental consent. Anna who is at age 13 is capable of deciding for herself. It is an age where a minor move from being a child to being a teenager and this is when human beings start to ask who they are and what will they become.
Anna is human, more than just a donor however, because of her up bringing she thinks differently and in the novel she starts to questions why she is really here. “I was born for a very specific purpose. I was because a scientist managed to hook up my mother’s eggs and my father’s sperm to create a specific combination of precious genetic material. As I got older, I didn’t seem to exist, except in relation to Kate”. (Pg 10) Within the book, Dr Bergen notes that “consent isn’t necessary until age thirteen.
We rely on parents consent until that point”, and that “once a child reaches adolescence, although they can’t give formal consent, they have to agree to any hospital procedure”. (Pg 303-304). The last bioethical issue I will discuss is the long term effects of a genetically engineered child and how that knowledge has become part of their identity. The experience of a child who knows that they were born only to save the life of an older sibling has many psychological implications. Anna Fitzgerald both knows and understands the reasons for her birth, and how it plays a significant role in her personal identity.
This is highlighted clearly in the opening pages of the book where Anna states “they chose little embryonic me, specifically, because I could save my sister Kate… unlike the rest of the free world, I didn’t get here by accident. And if your parents have you for a reason, then that reason better exist. Because once it’s gone, so are you” (pg 8); and again as she sits watching people in the laundry mat: “sometimes I try to imagine what it would be like to be the person whose clothes are spinning in front of m and I can’t. All I can ever see is me, being a donor for Kate, each time stretching to the next” (Pg 91).
Anna is referring to what would happen to her if Kate where to die. The author suggests that Anna will always feel tied her to her sister. “Kate and I are Siamese twins; you just can’t see the spot where we’re connected” (Pg 92). This also connects with how this might affect Kate in a similar way because both Kate and Anna cannot separate from each other and grow into distinct individuals. Therefore, the ethical implications of knowing one is the saviour, and one is the ‘saved’ may also have a long-term impact on a child’s life experience.
Although genetic engineering remains on the distant horizon, technological advances are bringing it from the imaginable to the possible. Therefore certain factors should be kept in mind when policy makers decide about the future of genetic engineering. One of the main moral dilemmas in “My Sister’s Keeper” by Jodi Picoult is how parents should balance the needs of their children. One of the central conflicts is whether Sara and Brian should require Anna to give up a kidney to save Kate. The Fitzgerald’s have been ethically right in the donations they have taken from Anna up until the point of the proposed kidney transplant.
The kidney transplant is significantly different from her prior procedures because Anna never explicitly said no to the core blood, bone marrow and leukocytes. However, she did say no to the kidney donation. The parents ignored her autonomy and are therefore wrong to make her donate an organ. While it may be ethical to create a donor sibling with the expressed intention of it being both a cord blood and bone marrow donor, it is not ethical to create a child in order for it to donate organs. If the situation does arise as a possibility then the child’s autonomy is the only thing that should be respected.