Outline

I. Introduction

II. Ethical Table

III. Savior Siblings

     a. Case Studies

     b.Legal Aspects

     c. Ethics

IV. Cloning

     a. Legal Map

     b. Ethics

V. Human-Pig Embryos

     a. Ethics

VI. Conclusion Video

 

I. Introduction

Take a second to imagine that your child is born with a life-threatening heritable disease. Traditional medicinal treatments such as drugs and other sorts of medication are not adequate to rectify the disorder and there is only one treatment for this condition, a bone marrow transplant. However, there is still a problem: these procedures are rarely successful unless the donor marrow is derived from a sibling with genetically identical tissue, which is determined by the specific human leukocyte antigen (HLA) type. The parents are unlikely to be a match for this tissue. What other option is available? Having another child that will match the HLA type of the patient. Through the use of in-vitro fertilization (IVF) and preimplantation genetic diagnosis (PGD) several embryos could be produced and tested for both the rare blood disorder and the HLA type. An embryo that is healthy and contains the right HLA type could then be implanted into the mother’s uterus and allowed to develop. Once the sibling is born their umbilical cord blood can be used as a source of healthy, new bone marrow for the sick child. This is an example of a ‘savior sibling,’ a child who is born to provide an organ or cell to a sibling that is suffering from a life-threatening disease.

Savior siblings offer a very important option for parents with children who suffer from heritable diseases, but that is not to say that there are not ethical and moral dilemmas associated with the procedures.

Feminist bioethics, flourishing societies and human rights perspectives are three frameworks that effectively allow us to delve deeper and further explore these ethical problems associated with savior siblings. It is worth noting that in recent years new technologies have began to emerge that have the potential to eliminate the need for savior siblings; these included, but are not limited to, cloning and chimeras (such as the human-pig embryo).

II. Ethical Table

Table 1. Various ethical frameworks and their relation to savior siblings ethics topics

Ethical Framework	Main Characteristics of Framework	Topics: Savior Siblings
Feminist Bioethics	Focus on various power differentials and vulnerable groups	Embryo vs. established human Practitioner vs. patient
	Challenge binary view of moral status	Quantifying our “humanity”
Flourishing Societies	Focus on the future bodily well-being of everyone in the society	Medical advancements allow for development of healthier society
Human Rights	Fundamental rights entitled simply because a human-being, Universal Declaration of Rights	What fundamental rights apply to embryos?
	Informed Consent	Parents must consent for embryos, is this ethical?
Utilitarian	Focus on outcomes-based reasoning	Use of savior siblings for scientific and medical advancement is practical
Equal-moral Status	Each human deserves the same amount of “humanity” and respect, with no regards to developmental stage	Use of savior siblings is unethical, embryos embody the same amount of “humanity” as established humans
Justice	Focus on the equal distribution of societal burdens and benefits	Embryos carry more burdens than benefits
Best-interest Standard	Determining whether donation of tissue or organs would be in the best interest of the child	Consider potential future familial ties between savior sibling and family Consider the existing relationship between the donor sibling and the recipient sibling

 

III. Savior Siblings

A savior sibling refers to the creation of a genetically matched human being to provide biologically materials such as blood, bone marrow or even organs to a fatally ill sibling. This technology requires for embryos to be created in vitro from the mother’s egg and father’s sperm. Then Pre-implantation genetic diagnosis (PGD) technology is used to screen all the embryos to select the ones that are free of genetic disorders and are a human leukocyte antigen (HLA) match for the fatally sick sibling. Of the embryos that are tested and matched one of them is implanted into the mother’s womb for the embryo to grow and develop (PGD, September 02 2016). The other embryos are saved or discarded. Upon delivery,whatever biological material is needed from the savior sibling is taken and put into the fatally ill sibling. 

Video 1: Describes the process of in-vitro fertilization. Permission to use this video was given by its standard YouTube licence.

 

a. Case Studies

1. Adam Nash was the first baby in the United States to be born through savior sibling technology to save his older sister Molly who was suffering from Fanconi anemia. Fanconi anemia is a genetic disorder characterized by failure of the bone marrow. When Adam was born a stem cell transplantation was done immediately and infused into his sister Molly’s circulatory system. Molly showed improvement in 4 weeks, and in three years her immune system was normal.

2. Fictional: Anna Fitzgerald’s, the savior sibling from My Sister’s Keeper, was born to save her sister Kate from leukemia, by donating her bone marrow to her. The once peaceful and simply going process as showcased in the story of Adam and Molly Nash quickly went sour when the savior sibling sued her parents for medical emancipation.  She believed she gave too much of  her to her sister such as; blood transfusions, bone marrow and a kidney (My Sister’s Keeper).

b. Legal Aspects

Federal Regulation: There is very little federal regulation of PGD. There is also no federal or state laws regulating the non therapeutic use of PGD, most likely due to the ongoing controversial national debate of the legal and moral status of embryos. This is why they leave regulation to the states and private sector (McClean, 851).

State’s parens patriae power

• PGD/Savior Sibling
  • The state may intervene on behalf of a child born through PGD if the state believes that the child is in danger, or not receiving adequate parental care due to its use as a savior sibling.
• Medical Context (Child donor)
  • Since minors do not have the ability to consent to medical procedures, the parent’s are responsible for making this decision
  • Parent’s consent may be restricted by the state’s parens patriae power if it appears that their decision endangers the child’s welfare “or has a potential for significant social burdens” (McClean, 853).

Best Interest Standard

• • Court determines whether allowing a child to donate tissue or organs would be in the best interest of the child and the child’s needs

• Corran vs. Bosze (Illinois Supreme Court)

• • Father of biological twins tried to compel them to donate bone marrow to younger brother suffering from leukemia.
  • Determined three “critical factors” for a transplant to be in best interest of donor child (McClean, 856-857).
    • (1) Parents must be informed of all risks and benefits encompassed in transplant procedure
    • (2) Parents who take care of the child must be able to provide adequate emotional support
    • (3) There must be a close, existing relationship between the donor sibling and the recipient sibling

“Currently, state regulation of PGD and savior siblings is sufficient because the technology has yet to be widely used. However, we need to have a federal legal framework ready for future implementation when the technology inevitably becomes more widespread. This federal framework should encompass the ideas and decisions brought about by state case law” (Hooven, 2017).

 

c. Ethics

The development of savior siblings became one of the most influential technologies in the field of obstetrics, embryology, and genetics. However, it also became one of the most controversial due to various ethical concerns associated with it.

Feminist Bioethics 

A common scenario that addresses the power differential between an embryo and human is the “who would you save if both a baby and petri dish holding an embryo were in danger,” often prompting people to save the baby. Scenarios like this elucidate the notion that, yes, there is a difference in the embodiment of “humanity” between a baby and embryo. However, just because the embryo embodies “humanity” to a lesser degree, does not mean it does not deserve respect.

Feminist bioethics also helps analyze the power differential between patient and practitioner, where the patients are the parents of the savior sibling (Zierhut, 2013). The main disparity of power between patient and practitioner is due to differences in educational levels. More times than often, patients are first informed of scientific technologies like IVF and PGD through their practitioners (Zierhut, 2013). This renders patients vulnerable to accessibility, or inaccessibility, to these technologies.

Feminist bioethics also challenges the binary view of “humanity,” in that they argue that there is no cut-off date for a being to be deemed “human,” or “not human.” Rather, feminist bioethics acknowledges that different developmental stages incite different magnitudes of “humanity,” and that as the embryo further develops it gradually acquires more “humanity.”

Flourishing Societies 

The use of these technologies allow for medical advancements, which would be supported by flourishing societies framework, as the main focus is on the bodily well-being of everyone in the society.

Human Rights

Many human rights ethicists are divided on this issue, because some view embryos as “human” while other don’t. If these embryos are considered human, then their fundamental rights are being violated. If these embryos are not considered human, then what fundamental rights apply to the embryo?

Utilitarian 

In terms of the utilitarian framework, the use of savior siblings would be justified since the technology allows for scientific and medical advancements, as well as saves human lives.

Equal Moral Status

The equal moral status framework states that all human beings are of equal status, regardless of their race, age, size, or even developmental stage (Harvard Magazine, 2009). Therefore, proponents of the equal moral status framework believe that a zygote, blastocyst, embryo, fetus, and established human being are all equally deserving of human dignity (Harvard Magazine, 2009). Due to this reasoning, ethicists following this framework view this technology as unethical.

Justice

The justice ethical framework seeks to analyze the societal burdens and benefits of each stakeholder, and ensure that they are distributed equally among stakeholders. With the use of this technology, there is an disproportionate amount of burdens on the embryo than other stakeholders, and therefore it is deemed unethical.

Best-Interest Standard

Considering existing familial ties and potential future familial ties are also analyzed in best-interest standard, where the best-interest of the embryo is taken into consideration.

IV. Cloning

There are two methods for reproductive cloning:

1. Somatic cell nuclear transfer (SCNT): this process removes the chromosomes from an egg and replaces it with the nucleus from a somatic cell, this includes skin or blood. This altered egg is then implanted to the uterus of an animal, if the implant is successful the result will be an animal clone through “natural birth”. With this method the number of clones is “limited theoretically only by the number of eggs that can be obtained to accept somatic cell nuclei and the number of females available to receive developing embryos (nap ch4, pg 25) ”
2. Embryo splitting (ES): In vitro fertilization creating a zygote outside female body; the zygote begins to split and the cells can be separated and then place into the uterus, potentially creating multiple identical twins.

These methods could be utilized for savior siblings in the IVF stage, potentially reducing the amount of embryos discarded since it increases the likelihood of creating a genetically identical embryo; although it is not without risks.

“There has been widespread condemnation of the practice (human reproductive cloning) in both the scientific world and the public sphere, and many countries explicitly outlaw the practice” (D. Elsner, 2006).

As of 2004 SCNT had 1% to 4% chance of success for live birth and few primates had successfully be cloned. Cattle and mice have been successfully cloned; however, their lives are hindered by several factors including increased risk of chronic diseases (diabetes in mice) and shortened lifespans. These defects are next to impossible to detect due to the “mosaic effect” in developing embryos. The mosaic effect is where epigenetic defects are expressed differently and unevenly throughout an organism. Efforts to improve primate cloning have been depressing. Sparman and co conducted an experiment in 2010 that used rhesus macaque monkey to replicate and improve a previous experiment. Sadly the experiment resulted with five pregnancies out of sixty-seven embryos. Only one fetus had a heartbeat and was aborted on day eighty-one.

These are problems that have arisen in non-human experiments and with little progress in primate cloning it is difficult to accurately predict the possibility of human reproductive cloning (HRC) in twenty or thirty years.

However, what if we could create unconscious clones? Researchers at the University of Texas and University of Bath are working to make this become a reality. They have managed to identify the gene in mice and frogs that encodes for the embryo to produce the head and deleted it, effectively creating headless mice and tadpoles. The researchers are extremely confident that they would be capable of doing a similar procedure on a human, thus creating an unconscious, brainless human body that could not be considered a person and so it should be perfectly legal to store them as a future source of organs (Krauthammer, 2001).

a. Legal Map

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Map 1: Interactive map on global policies on human reproductive cloning. Map created by Miriam Molini on Esri.

b. Ethics

Utilitarianism: “attaining greatest happiness”. In this case “greatest happiness” would be the potentiality of ridding genetic diseases in a living child.

• The mother would be obligated by societal standards to have the alternate clone (AC) regardless of her desire for another child or ability to care for the new life. 
  • The AC would be born with an advantage on having the genetic disease spliced out
    • does not include potential psychological disorders that may manifest.

• The growth process for clones is different from natural birth (home environment, memories) thus making it impossible for clones (lab environment,different memories, aged genetic material) to be exactly the same though they will be genetically similar.

Rights: As a reminder the Universal Declaration of Rights Article 1 says, “all humans are born free and equal in dignity and rights” and “(2) Motherhood and childhood are entitled to special care and assistance. All children, whether born in or out of wedlock, shall enjoy the same protection.”

• the mother must decide on behalf of her current ailing child and the unborn AC and the patient in this case is (most likely) too young to coherently decide for itself,
• The mother has the right to maintain her personal care, but does she have the right to deny the natural rights of her first child (the patient)?
  • as the guardian and caretaker the mother must decide what would be the best option for the patient, but denial would be unethical as it conflicts with Article 1. Thus the ethical choice by rights is to undergo HRC.

Flourishing societies:

Science fiction often allows current society the ability to observe the public image on how cloning humans would look in the future.

• the Sci-fi blog story To Clone a Savior Sibling describes a scenario where human cloning is not only affordable but encouraged; although the clones are not perceived as people by the general public, they are seen as extra organs since they are confined.
  • This would qualify as a flourishing society since the the chance of organ failure or damage is negated by the immediate replacement.
• The Island, a movie from 2005, cloning is reserved for only the very wealthy and the facility is stationed in international waters to avoid legal complications; however, these clones believe they are living their own lives.
  • This implies that human cloning is expensive, or tightly controlled, and borderline illegal
  • does not satisfy the criteria for flourishing societies since the clones do not serve society as a whole but are tailored to specific members.

Should and can the mother provide for two children? The most optimal outcome would be if the mother has the AC and, if she is unable to to care for a second child, an adoption program could be instigated like the form of the 2007 movie Juno where a high school student volunteers her unborn child to a childless couple. This method gives the AC a chance at a life that the Mother would be unable to provide while also granting the Patient a better wholesome life.

V. Human-Pig Embryo

Before January 26, 2017 the ability to produce a human-animal hybrid had yet to be done (Blakemore, 2017). Scientists needed to introduce human stem cells, cells that have the potential to become different types of tissue, to a pig embryo in order to create a human-pig embryo hybrid (Wade, 2017). However, for stem cells to thrive and differentiate into other cell types they must be in the proper environment to do so. Pigs were a great candidate because of their similarities to humans. Through trial and error scientists were able to inject the pig embryos with human stem cells that did not die after a few weeks of gestation in adult pigs (Blakemore, 2017). Ideally, the pigs would be born with the desired human organs until the organs were harvested for human-use like transplantation.

Flourishing Society:

• Do we want to live in a society where it is ethical to raise pigs only to kill them?
  • We already do this with pig farms; raising pigs to kill them for food
• These human-pig embryos would be used to save humans
  • This is ideally the goal for a society

Human Rights:

• Since we have a right to life if there is a technology to save people, do humans have a right to utilize it?
  • It is difficult for this technology to be shared equally and free from discrimination due to the availability of the technology (price, location, etc.) towards the beginning of its development
  • It does save people’s lives which in turn is something a human rights ethicist would believe is right

 

VI. Conclusion Video

Video 2: A concise conclusion highlighting the major points within the page above. Video created by Jessica Cornell using PowToon.

About Us

The content in this webpage may or may not reflect each individuals views on the topics.

References

Wheat, K., & Matthews, K. (n.d.). World Human Cloning Policies. Retrieved April 17, 2017, from http://www.ruf.rice.edu/~neal/stemcell/World.pdf

Krauthammer, C. (2001, June 24). Of Headless Mice…And Men. Retrieved April 06, 2017, from http://content.time.com/time/magazine/article/0,9171,138483,00.html

Read “Scientific and Medical Aspects of Human Reproductive Cloning” at NAP.edu. (n.d.). Retrieved April 01, 2017, from https://www.nap.edu/read/10285/chapter/4#26  

Elsner, D. (2006, October). Just another reproductive technology? The ethics of human reproductive cloning as an experimental medical procedure. Retrieved April 13, 2017, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2563311/  

SPARMAN, M. L., Tachibana, M., & MITALIPOV, S. M. (2010). Cloning of non-human primates: the road “less traveled by”. Retrieved April 13, 2017, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3110695/  

Blakemore, E. (2017). Human-Pig Hybrid Created in the Lab—Here Are the Facts. Retrieved April 5, 2017, from http://news.nationalgeographic.com/2017/01/human-pig-hybrid-embryo-chimera-organs-health-science/

Wade, N. (2017). New Prospects for Growing Human Replacement Organs in Animals – The New York Times. Retrieved April 3, 2017, from https://www.nytimes.com/2017/01/26/science/chimera-stemcells-organs.html?_r=0

McClean, M. (2016). Children’s Anatomy v. Children’s Autonomy: Precarious Balancing Act with Preimplantation Genetic Diagnosis and the Creation of Savior Siblings. Pepperdine Law Review 43(3), 837-880.

(2014, July 27). How Does IVF Work? Description on the process of IVF. Retrieved April 18, 2017, from https://www.youtube.com/watch?v=fWPh3vJdl24

My Sister’s Keeper. (n.d.). Retrieved April 15, 2017, from http://www.sparknotes.com/lit/my-sisters-keeper/summary.html

Preimplantation Genetic Diagnosis: Benefits & Concerns. (2016, September 02). Retrieved April 17, 2017, from http://americanpregnancy.org/infertility/preimplantation-genetic-diagnosis/

Rivard, L. (n.d.). Case Study in Savior Siblings. Retrieved April 18, 2017, from https://www.nature.com/scitable/forums/genetics-generation/case-study-in-savior-siblings-104229158

Garcia-Santillan, A. D. (n.d.). Unpublished Essay. Retrieved February 27, 2017, from https://docs.google.com/document/d/1KTpM0GThCfSaaPPgOjrkjxjFoSlBQT72ibExMLDOhZ8

Zierhut, H., MacMillan, M.L., Wagner, J.E. et al. J Genet Counsel (2013) 22: 594.

Debating the Moral Status of the Embryo. (2009, March 30). Retrieved April 12, 2017, from http://harvardmagazine.com/2004/07/debating-the-moral-statu.html