To complete the genetics connection to society project, I choose to watch My Sisters Keeper directed by Nick Cassavetes. The film revolves around a family of five, Sarah (mother), Brain (father), Jesse (older son), Kate (daughter)and Anna (daughter). We see stories of families being built by planning for babies, a coincidence or even accidents. Jesse and Kate, both were conceived through natural sex that occurred. Life for the family of 4 was going great, until Kate became very ill. Her family took her to the doctor, and she had a low count of white blood cells and was diagnosed with Leukemia. The parents and Jesse were not compatible to help with medical donations. Dr. Chance (Annas oncologist) told the family that another option would be if they were planning to have another baby. He told them it would be a 100% match, by making sure certain genetic characteristics were present. Anna was genetically engineered to make a specific combo of genes for her ill sister (so that they both could be compatible). She was an in vitro child, to be Kate’s savior.
As soon as Anna was a newborn she began donating to her older sister. The list continued as she grew older and included many bone marrow transplants, peripheral blood, and umbilical cord blood, lymphocyte extractions, granulocytes, but it all didn’t seem enough. Kate is not getting any better and her kidney is not functioning anymore, so she needs a transplant. Anna at age 11 takes a turn when she gets a consultation with a lawyer, Campbell Alexander. Anna states that she is a designer baby and was made to save her sister life and wants to sue her parents for rights to her own body and she wants medical emancipation. This makes her mom furious because she wants to make sure her daughter Kate lives. Anna points out facts about the surgery, including its outcome if it’s a failure and doesn’t work and that for the rest of her life she would need to be careful. Which are very important factors to take into consideration.
Sarah has sacrificed a lot with having an ill daughter, she even quit her job as a lawyer. Sarah is still on the side that she needs to help save her daughters life. While Brian is starting to look at this situation through a different lens. He mentions “we went against nature; these are the consequences”. Brian is also trying to get Sarah to realize the mental and emotional trauma Anna went through when she was young, when she would get bone marrow extractions. Brian knows that he doesn’t want her daughter Anna, to see her own parents as forcing her and using her.
The movie states that at the age of 14 you can get emancipated in the state of California (which is true in real-life), yet Anna is only 11. The lawyer points out many questions including if Anna (at age 5) was able to provide medical consent for all the procedures she went through. The lawyer and Anna are trying to create a law on medical emancipation since currently there is no law specifically on medical emancipation. They also clarify that Anna wants limited termination of parental rights. Inside the hospital, Sarah is asked if she even cares about what Kate wants. She says she doesn’t care what anyone wants and they she is getting operated. During court you have doctors stating the psychological benefits of donating as well as trying to come to a consensus at what age does one understand and can take medical decisions. They also mention one benefit that Anna receives which is saving the life of her sister. To close the argument the lawyer mentions that we are all aware of Kates medical history but not of Anna’s and how invasive they are and the impact they have. Sarah will stand up for Kate, but the lawyer then asks, “who will stand up for Anna?”. This is the case for all savior child, who will stand up for them?
Later during the end of the film, Jesse tells Anna to tell the truth to the judge. In the end Anna was doing this because Kate wanted to die. Kate had coached anna on what to say. The mother just didn’t want to hear it or believe it. Then, Kate passed away and a little bit afterwards the lawyer came to visit anna and said that they had won the case and that she was medically emancipated. Currently in the state of Washington allows minors 16 and older to petition to court for emancipation. There are also laws regarding minors giving consent without parents’ approval to health care services.
In, connection to the class content, the film mentioned being able to genetically engineer a baby to have certain characteristics, which is something you can do. A savior baby is a concept that we also learned in class. In Where science and Ethics Meet, Chris Willmott and Salvador Macip state that a savior child is “a term used to define a child conceived via IVF as a potential tissue donor for a sick brother or sister”. In order for this to have occurred in the film, Preimplantation genetic diagnosis needed to occur so that the embryo could be a genetic match to Kate so she could receive a transplant. PGD process was not shown in the film. Within the topic of genetic engineering and a savior child, we talked about some of the benefits and unethical concerns related to this topic. Which include that you can then provide treatment for a sick relative. On the other hand, there are also possible psychological impact on the savior sibling (Anna). Both points mentioned in class discussion where mentioned in the film. I do question would have genetic testing (early on) stopped Sarah and Brian to conceive an ill child. Would they have aborted the child if they knew Kate’s condition before she was even born?
Autonomy of the individual is also a concept that we touched in class. Both Anna and Kate have that right. Kate could have been asked what her wishes were. Anna wanted to have the same mindset of autonomy for her own body, but this becomes a bit more complicated because she is only 11 years old. This then brings the question to what age are individuals allowed to make medical decisions and can it vary and not be a “fits all model”.
In an article titled “Should Children be Asked to be Bone Marrow Transplant?” by Katrina Williamson and Christian Vercler state of a case of Mandy who has acute myeloid leukemia and needs bone marrow transplant, Mandy has an 8 year old sister, Jessica who is compatible and the family is now overjoyed. Jessica seemed excited to know that she could help her older sister, yet she seems to have many questions and is a bit confused. As we know it’s the patients right to respect their autonomy, yet age is a very big factor in this case, similar to the film. Technically minors can not give consent to medical interventions, but their opinion is honored. This article adds that “they will only permit the child to undergo a potentially painful procedure when the health benefits of that procedure outweigh the risks.” When the outweigh is not clear that is when the ethical part of it comes into question. According to the American Academy of Pediatric Committee on Bioethics (AAPCOB) the use of a child bone marrow donor must meet 5 conditions that include (1) no adult matches (2) bone marrow transplant must have benefits to the recipient (3) strong personal relationship with the donor and recipient (4)medical, emotional, and psychological risks must be considered (5) parents consent and patient assent. In the film, Kate didn’t want Anna to continue donating because she just wanted to die, therefore even though Anna had her parents’ consent, they were not considering Kate’s wishes (patients assent).
To end the film shows the case of Anna who was genetically engineered as a savior child to her sister Kate. The film presented the parents having the freedom to choose and make this decision. Kate was suffering a lot, attention from other siblings was taken away because of her condition. The parents always want to best for their children, but is creating a savior child the best for their child? Does it vary by family? What if the wishes of the sick child are just to let life do its course and for her to pass away when her time comes? This film provides a little bit of insight on the topic of a savior child who was genetically engineered and what can happen if you go against nature. I would also add that this film does not represent all cases of genetically engineered savior children. In this case it was not that Anna truly wanted rights to her own body, but that Kate just wanted to die and not live anymore. I’m sure that there are cases of savior children who don’t want to continue playing that role in their life. It hinders your ability to be yourself and can also affect your health both mentally and physically. In all, genetics is a very powerful tool, but were does it become ethical or unethical. These can be or are real life scenarios and have huge consequences and impact not just the individual but every single one that is involved.