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The Politicized Nature of Bioethics

The President’s Council on Bioethics, created in 2001 by President George W. Bush, was born out of a time when the conversation of bioethics, and specifically the ethics of human cloning, was at the national forefront. The cloning of mammals has become a possibility only 5 years prior and cloning technologies were a rapidly growing field. The Council, led by Leon Kass and made up of 16 other academics and professionals in the fields of medicine, biology, law, and ethics, was then tasked with providing official recommendations to the President on topics regarding human cloning for reproduction, human cloning for research, and their legal and ethical ramifications. Cloning moved from the realm of science to the political sphere as groups on every side called for federal oversight and regulation. Kass, appointed by a Republican president and representing a very white, very male group of highly educated professionals appeared to be influenced by both his own conservative views and those of his President when the council unanimously deemed human cloning for reproduction as unethical. Although Kass has asserted that “the Council’s work has been entirely free from any political manipulation or meddling by the White House,” (2005) it is difficult to deny the clearly conservative undertones inherent in the tone of Human Cloning and Human Dignity: An Ethical Inquiry (2002). The main reason for deeming such cloning practices as unethical were not rooted in a concern for safety, but rather a concern for both the dignity of the cloned individual and “[the] elusive core of our humanity, those special qualities that make us more than beasts yet less than gods.” This mentality of inherent human dignity and assertion of a natural law that places man as ruler over all other species is one that comes from the United States’ long established protestantism, which has now become secularized into the notion of ethics that we subscribe to in the U.S.

Germany is an example of a country where this issue is not divided along party lines. Bioethical concerns are instead dealt with between techno-skeptics and techno-optimists Optimists believe theirs is a “battle between rationality and knowledge on the one hand and ignorance, emotionality, and moral fundamentalism on the other.” In Germany, it is usually geneticists and bioethicists who provide their expertise to inform policy decisions who take this position. On the other side, techno-skeptics are not against technology and developments, but rather they support the limiting of technology to emphasize what is at stakes, and who may be more vulnerable when using new technology. Those who fall under this camp are more in line with the belief of sanctity of life, or dignity of life that we know in the U.S. The key difference between American ethics and German ethics can be boiled down to a code of ethics that protects individual rights vs. a code of ethics that values and upholds the common good.

Braun’s model of managerial vs. republican discourse is helpful here because it allows us to widen our scope of what we can consider “ethical” if we are not solely limited to the U.S.-centric ideal of conservatism vs liberalism which frames policy debates but especially those related to reproductive technologies. Stepping away from the partisan model of policymaking will also allow us to reach a more just version of bioethics, which would address “broader issues of global justice in medical research and health disparities between industrialized and developing countries[…] concerns [which] appear to be entirely absent from the conservatives’ project” (Macklin 2012).

Kathrin Braun, “Not Just for Experts: The Public Debate about Reprogenetics in Germany.” Hastings Center Report 35 (2005): 42-49.

Leon R. Kass, Human Cloning and Human Dignity (President’s Council on Bioethics, 2002).

Leon R. Kass, Reflections on Public Bioethics: A View from the Trenches,” Kennedy Institute of Ethics Journal 15 (2005): 221-250.

Ruth Macklin, “The New Conservatives in Bioethics: Who are they and what do they seek?” Hastings Center Report 36 (January-February 2006): 34-43.

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Investigating the Intersection Between Anthropological Discourse and Public Policy in Bioethical Matters of Human Cloning

Investigating the role of public policy in human cloning brings to light the complexity yet importance of our national discourse on bioethics. As many of the prominent figures in this debate have stated, the technology of human cloning crosses over a line that has never been crossed in the past. This places the entirety of human society at a unique place of moral pioneership that brings to attention conversations involving the role of biotechnology and science in serving humanity. Regardless of individual opinions on the morality of the issue itself, all parties are in agreement that multifaceted consideration and prudence is obligatory in order to most responsibly proceed in taking ethical action. However, the actual process of decision making proves to be immensely difficult. The diversity of America in every imaginable regard—socioeconomic history, cultural background and religious beliefs, education level, among many others—presents a multiplicity of voices that add nuance and ample disagreements to the national debate. At this current time, attempts at drafting federal legislation on the issue of human cloning have failed, though the debate continues with intensity. Not only do personal beliefs on the role of science in society filter into the discourse, but also beliefs on the role of the federal government in protecting individual autonomy while securing the overall good of society. 

One of the prominent voices of the debate came from the President’s Council on Bioethics (PCB). This council was appointed under the Bush administration, with Bush appointing Leon Kass as the chairman, and Kass appointing the rest of the 17 member council. According the Kass, the diversity of academic background, cultural practices and religious beliefs among the members of the board make their council an excellent environment for multifaceted consideration of the debate on human cloning (Kass, 2002). Each member possessed advanced degrees and unique expertise in their respective fields. In striving to detach themselves initially from the impasse experienced in the public policy arena, one of their primary intents was to clarify the jargon behind this new technology while presenting many different viewpoints in order to stimulate continued debate. They believed that their cumulative expertise allowed them to advise politicians and members of the public, but stressed that the crux of the decision making had to come from the opinion of the general public, whom Kass described as the rightful arbiters of these highly public matters (Kass, 2005). 

Overall, the council appears to stress caution regarding the use of cloning technologies. Their unanimous opinion involves the total banning of cloning-to-produce-children, and support either a political moratorium or immediate regulation regarding cloning-for-biomedical-research. In my opinion, two levels of focus generally describe the foundation of their arguments: first, when investigating the potential proximate ramifications of this technology, they give consideration to the uncertain safety of the mother and child, and some members also call into account the moral status of the embryo. Second, the ultimate implications may involve what they describe as “a devaluation of human goods,” namely human dignity, respect for the weak, and protection of the family and individual identity. Kass mentions the code of ethics from the Nuremberg trials quite frequently, and uses the concepts of equal beneficence, nonmaleficence, and justice to support their call for caution (Kass, 2002). 

On the other side of the national debate, many bioethicists are quick to label the council and similar opinions as belonging to political conservatism. According to self-described “liberal humanitarian bioethicist” Ruth Macklin, prominent individuals such as Kass, Krauthammer, and Neuhaus present insufficient arguments for their stance of reluctance. Macklin points out differences in rhetorical style between the liberal and conservative sides of the debate by suggesting that conservative dialogue places emphasis on an “intuitionist epistemology” that they view as self-evident. They rely on broad concepts of human dignity without much clarity and give value to “deep moral sentiments.” She brings as an example the viewpoint that “children are a gift [from God],” an argument that may stand as self-evident among people from similar religious backgrounds, but is not necessarily the case for all individuals. Macklin notes that Kass’s style of rhetoric actually serves as a barrier to productive debate, which is antithetical to the intent of their council. In order to properly engage not only the general public but also the community of scientists, politicians, and bioethicists—the experts in their fields of study—it is necessary to engage in more common discourse without such heavy reliance on vague and emotionally-charged rhetoric (Macklin, 2006).

As presented above, there is often correlation between religious beliefs and the tendency to use emotion-filled rhetoric with powerful concepts such as “human dignity” when looking at the morality of human cloning. While the non-religious and generally liberal group of bioethicists may find it difficult establishing common ground for debate when conversing with those from religious backgrounds, certain voices present compelling reasons for the compatibility of religion and discourse on human cloning. In specifically the Jewish context, Rabbi Yitzchok Breitowitz elaborates upon personal beliefs to question the inherent stereotype that religious discourse is close-minded to the debate. Breitowitz points out that humans were created in the image of God, the ultimate Creator. God gifts humans with creativity, the capacity to partner alongside Him in the ultimate mission of alleviating suffering, and the obligation to make moral judgements given our capability for rational thinking. He acknowledges the tension between leaning on human reasoning and remembering a stance of utmost humility before God, but asserts that the latter consideration should not be a hindrance towards the former: in other words, his religious beliefs compel him to more critically engage in the debate to best consider the most societally beneficial action as a whole (Breitowitz, 2004).

At this time, the weight of complexity makes it feel that adding a whole other national discourse would just convolute our understanding even more. However, a brief analysis of the German conversation on the bioethics of human cloning presents a valuable alternative that can be used for comparison as we strive to productively take action in our own national debate. It is interesting that proponents and opponents are not drawn across political lines of liberalism vs. conservatism in Germany, but a whole spectrum of political beliefs can be found in each of their categories: techno-optimists vs. techno-skeptics. The debate constantly wavers under a tension between “managerial discourse” and “Republican discourse.” The former focuses on knowledge from experts, functions largely on risk-benefit analysis, narrows the debate to add focus, and serves to help make “public opinion rational” and better informed. The latter focuses on discourse regarding the broader scope of human goods and the meaning of humanity, simultaneously allowing for consideration of religious beliefs and the ethics of social justice (Braun, 2005). The two perspectives effectively complement one another in a way that could perhaps be of value to the current debate in our own nation. 

In taking a step back, we see value in engaging in this debate on bioethics not only because it is a topic of utmost concern for the state of our nation and the evolution of humanity, but also because of the rich anthropological investigation it entails as we observe tensions, limitations, and the complexity of human nature in our highly structured society. Much like the format that Leon Kass marshalled in the council’s broad focus on human society, attempting to initially refrain from asserting directionality and instead simply giving merit to the construction of multiple viewpoints, anthropology likewise aims to provide the freedom in pursuing a holistic understanding. Kass leaned on certain truths that were driven by intuition, in some regards similar to the activity of the anthropological researcher who investigates issues that aren’t necessarily observable based on quantifiable figures. However, just as critics demanded that Kass ground his discourse in concrete rhetoric in order to more effectively communicate on common grounds, it is important to remember that anthropology not only serves to increase the exciting freedom of academic exploration, but also acts as a potent tool towards informing public policy and grounding many other areas of human society. It is under these tensions that we may flourish in advancing closer towards productive discourse, social justice, and the overall betterment of human society. 

SOURCES

Kathrin Braun, “Not Just for Experts: The Public Debate about Reprogenetics in Germany.” Hastings Center Report 35 (2005): 42-49.

Leon R. Kass, Human Cloning and Human Dignity (President’s Council on Bioethics, 2002).

Leon R. Kass, Reflections on Public Bioethics: A View from the Trenches,” Kennedy Institute of Ethics Journal 15 (2005): 221-250.

Ruth Macklin, “The New Conservatives in Bioethics: Who are they and what do they seek?” Hastings Center Report 36 (January-February 2006): 34-43.

Yitzchok Breitowitz, “What’s So Bad about Human Cloning?” Kennedy Institute of Ethics Journal (2004): 325-341.

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Pluralistic Considerations of Bioethics

Swasti Bhattacharya, Michael J. Broyde and directors Vaishali Sinha and Rebecca Haimowitz provide prospectives on bioethical interpretations of reproductive technologies in the 21st century. They interpret bioethics specifically through the lens of Jewish and Hindu religions, as well as Indian culture and Islam. All of them accomplish this through different methods. Bhattacharya interprets bioethics relating to reproductive technology through a Hindu lens. She focuses specifically on Mahābhārata, a well-known religious epic, to focus on six key elements of Hindu thought to guide her discussion of reproductive technology and bioethics. Michael J. Broyde discusses reproductive technology in the context of halakhah, or Jewish law. Vaishali Sinha’s and Rebecca Haimowitz’s film “Made in India” follows an American couple through their experience with surrogacy in Mumbai, India.

Swasti Bhattacharya establishes an interpretation of Hindu bioethical rationale of reproductive technology in her book, “Magical Progeny, Modern Technology”. She does this to increase cultural understandings of Hindu bioethics in the US, as most scholarship in the field is informed through Jewish or Christian notions. Bhattacharya stresses multiple times throughout the book that her interpretation of Hindu bioethics through the Mahābhārata is one perspective. She makes it very clear that Hinduism exists in great variability, that it is not a monolith. Her choice to interpret the Mahābhārata comes from its popularity, as well as its relevancy to the topic: she focuses on the struggles of Kunti, Madri and Gandhari in conceiving a child. Bhattacharya then examines Hindu ethical interpretations of reproductive technology through six main themes found in the text: “1) an emphasis on the centrality of societal good 2) a firm belief in the underlying unity of all life 3) the expectations and requirements of dharma 4) the multivalent nature of Hindu traditions 5) karma theory and 6) commitment to no harm” (Bhattacharya 77). Through these six themes, she turns to a case study of a Californian family’s experience with IVF to demonstrate that above all, Hindu ethics is concerned with societal and universal good, and reproductive technologies must be analyzed under that lens.

Michael J. Broyde discusses halakhah (Jewish law), reproductive technology, and bioethics in a book chapter titled, “Modern Reproductive Technologies and Jewish Law”. He finds that if cloning is absolutely necessary, it can be interpreted as a “mitzvah” (a good deed), or as morally neutral. He contends that while the ethical consideration of cloning is incredibly dependent of the context, it is not in the Jewish interest to prohibit, as this goes against tradition which, “…imposes a duty on those capable of resolving such matters to do so” (Broyde 316). Broyde proposes three guidelines regarding cloning that work to prevent violations of halakhah. All three of the guidelines tend towards keeping the amount of bodies involved in the process as minimal as possible, hopefully between a man and wife, and that if not a non-Jew then an unmarried Jewish women should be involved in carrying the clone. Both Broyde and Bhattacharya stress that their interpretation of religious notions of bioethics and reproductive technology do not stand as a monolith for the entire religion.

Vaishali Sinha’s and Rebecca Haimowitz’s film “Made in India” focuses more on cross-cultural ethical considerations of surrogacy as an American couple outsources their surrogate from India. Lisa and Brian recruit Aasia through a surrogacy agency in Mumbai to carry their twins. Aasia signs on to provide for her family because she lives in poverty, despite her husband’s disapproval for religious reasons. Aasia and her family are Muslim. Aasia actually ends up having to leave her home and stay in a surrogacy house before prematurely giving birth to the twins alone in a hospital. She relies on her sister to act as a liaison for her due to her husband’s disapproval. Back in the US, Lisa and Brian face backlash after an appearance on national television telling their story, many people saying that they are taking advantage of Aasia’s poor living conditions to pay her less. In the end of the film, Sinha and Haimowitz highlight how Aasia is in fact cheated out of money promised to her via contractual obligations. The film highlights how assistive reproductive technology, left unregulated, becomes ethically muddled. They also demonstrate how little all parties involved care for the rights of the surrogate mother. The medical tourism liaisons at the end of the film speak about attending conferences to set up regulations and guidelines, but lack regard for the human and economic rights of their surrogates.

What I have taken from all of these sources is that assistive reproduction technologies must be strictly regulated within a pluralistic context to ensure the people involved are protected.

Sources:

Swasti Bhattacharya, Magical Progeny, Modern Technology: A Hindu Bioethics of Reproductive Technology (Suny University Press, 2006). 

Michael J. Broyde, “Modern Reproductive Technologies and Jewish Law,” In Michael J. Broyde and Michael Ausubel editors, Marriage, Sex and the Family in Judaism  (Rowman and Littlefield, 2005), pp. 295-328. 

Made in India~Owned Content – Emory University, 2010. Kanopy. Web. 13 Jun. 2020.

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Reproductive Technology and its Clash with Religion and Culture

As assistive reproductive technology grows more refined, developed, and even desired around the world, there is great importance in understanding the role this technology plays among different cultures and religions. Such bioethical conversations are being had in order to examine these cross-cultural views. The works of Broyde and Bhattacharyya, as well as Rebecca Haimowitz and Vaishali Sinha’s film, aim to provide thought and rationalization on reproductive technologies within the boundaries of two religions, Judaism and Hinduism. In “Magical Progeny, Modern Technology: A Hindu Bioethics of Reproductive Technology,” Swasti Bhattacharyya describes an ancient Hindu text, the Mahabharata, in order to address assistive reproductive technology from a Hindu perspective. Michael Broyde’s “Modern Reproductive Technologies and Jewish Law”  and “Marriage, Sex and the Family in Judaism” address the reproductive technology of cloning from the viewpoint of Jewish law, or, Halakhah. Made in India, a film directed by Rebbecca Haimowitz and Vaishali Sinha, highlights the consequences and hardships that come with choosing to use reproductive technology in India, specifically within the Muslim tradition. While differing in their methodologies and purpose, these pieces use religious texts/ideals to provide a clearer foundation on which reproductive bioethics is built among different traditions.

Bhattacharyya describes her methodology as interdisciplinary and organic. She writes, “It is interdisciplinary in that it draws together elements from the diverse fields of South Asian studies, literature, religion, bioethics, nursing, and some insights offered by a few contemporary voices from a Hindu community in Southern California” (Bhattacharyya 14). By utilizing narrative ethics, Bhattacharyya forms a clear picture of the Hindu ethic that encompasses many elements derived from the Hindu religion and culture. It is in these religious, cultural, and philosophical elements of the Mahabharata that the organic nature of the Hindu ethic lies. 

To explore these perspectives, Bhattacharyya reviews the Mahabharata, one of the most popular and sacred texts from India. She justifies her choice of the piece saying “This text preserves past ideology, records teachings and insights of its own time, and provides guidance for the future” (41). Bhattacharyya creates a space for further bioethical discussion concerning reproductive technology. Hindu is not a monotheistic religion and its pluralism encompasses much more than the Gods. As quoted in Battacharyya’s piece, Arnold Sharna assesses that Hinduism is “a religion of guidelines rather than rules.”  There are “fluid boundaries between various categories and internal diversity among official, unofficial, orthodox, and popular expression of Hinduism” (Bhattacharyya 20). In the Mahabharata, the emphasis is placed on the creation of a child rather than the path of procreation as shown by the paths taken by the divine figures in the text. Bhattacharyya claims that Hinduism has the betterment of the society in mind and encourages all types of procreation. In contrast, Broyde focuses on the “technologically” produced child and the kinship within the Jewish family it is born into. 

Broyde writes, “Every legal, religious, or ethical system has to insist that advances in technologies be evaluated against the touchstones of its moral systems. In the Jewish tradition, that touchstone is Halakhah, the corpus of Jewish law and ethics” (Broyde 295). Broyde works to analyze the technology of cloning from the perspective of Halakhah and the Hebrew Bible. These texts contain commandments, laws, and other writings that act as a universal doctrine for Jews, holding much more weight within Judaism than the Mahabharata in Hinduism. Broyde argues that there are two sides to the debate of cloning. One is the Jewish sense of duty and obligation to help those in need in the eyes of reproduction. The other side concerns the “God-given morality” of Jews- not everything society wants or can do is proper in the eyes of God. To address cloning technology, Broyde examines IVF practices through the lens of kinship. In Israel, “genetic relationship does not establish legal relationship” (305). Broyde describes how kinship issues arise because the gestational mother is considered to be the “real” mother in Israel. Broyde writes, “Generally speaking, unlike the common law tradition and Jewish law, modern American law views status issues such as parenthood as something that law determines, rather than something that the law discovers” (Broyde 506). 

While Broyde and Bhattacharyya’s pieces eloquently examine the bioethics of reproduction within Judaism and Hinduism, Made in India, a film directed by Rebecca Haimowitz and Vaishali Sinha, explores the truly personal nature of surrogacy and its clash with religion and culture. Lisa and Brian Switzer are unable to get pregnant on their own, but cannot afford the high price of surrogacy in the United States. After researching other outlets, the couple discovers the booming surrogacy industry in India. Their surrogate, Aasia Khan, is a poor, Muslim woman living in Mumbai, India with her children and husband who wants to save the money she’ll receive from surrogacy for her daughter’s future. As the film unfolds, complications arise among her family, and Aasia moves out of her home and leaves her children as a result of her husband’s disapproval of her pregnancy. The film highlights the unregulated reproductive industry in India and the charged discourse over surrogacy as it clashes with religion, ethics, and society

As assistive reproductive technology continues to develop and grow even more influential, questions of ethics and morality will also rise, placing a greater focus on how this technology interacts with religion and culture. The film, Made in India, shows this clash between religion and culture as it relates to the surrogate mother, Aasia. In the texts, Bhattacharyya proposes a more fluid, pluralistic perspective on the bioethics of reproduction within Hinduism, perhaps foreshadowing a greater acceptance of further technology in the future. Broyde, on the other hand, describes a clear, direct picture of the Jewish perspective, more rigid in its guidelines. While differing in their methodology and arguments, these works call upon religious/cultural texts or ideals to draw their conclusions on the use of assistive reproductive technology. 

Works Cited

Bhattacharya, S. (2006). Magical Progeny, Modern Technology: A Hindu Bioethics of Reproductive Technology. Suny University Press

Broyde, M. J. (2005). Modern Reproductive Technologies and Jewish Law. Marriage, Sex, and the Family in Judaism, 295-328. Rowman & Littlefield Pub, Inc.

Made in India~Owned Content – Emory University, 2010. Kanopy. Web. 13 Jun. 2020.

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Pre-Natal Testing and the Moral Dilemma

In the book Testing Women, Testing the Fetus: The Social Impact of Amniocentesis In America by Rayna Rapp and the film The Burden of Knowledge: Moral Dilemmas in PreNatal Testing by Wendy Conquest, Bob Drake, and Deni Elliott both attempt to break down the decision making process of how women use prenatal and diagnostic testing through real life experiences and how they are influenced by many factors such as sociological, historical, or religious factors and the anxiety this can cause. 

Rayna Rapp broke down the chapters in her book beginning with the history of genetic experimentation to prenatal testing and diagnostic testing as more was and is being learned about genetics, and follows through with the beginning of a woman’s journey through the prenatal testing process. Throughout each chapter there is a continuation of the theme that there is not a specific answer for why people chose to make certain decisions, and emphasizes the complexity of the process. The film gives us a visual representation of the interviews taking place as a glimpse of the exact words used from the women through their personal processes. In this blog post I would like to highlight a few points made in both the film and the book that aligned and sparked my interest for further discussion.

To begin, through both of these  interview processes it is clear how important communication is to the patient- professional relationship. Rapp in the chapter Communication of Risk writes about how language is key to know if a patient  truly understands the purpose of prenatal and diagnostic testing. Rapp explains how through her interview she questions if the women truly understood what procedure they had done and what the results truly meant. She knew that women had different levels of education especially with a science background. This gap in communication was not only from the side of the patient but when Rapp interviewed genetic counselors that felt like they needed to be more trained in ethno-cultures of their patient demographic. The obvious is if you do not speak a language you cannot communicate, but it also calls into question how can someone communicate effectively if they do not know how to culturally phrase a question or continue a conversation to learn more about a patient if they do not know anything about that culture? There was the example from the book of a large patient demographic that spoke creole and little to none of the workers there spoke the language. Rapp gave the instance of a healthcare professional phrasing questions to certain people of different cultural backgrounds not knowing that it can be taken as an insult and easily offend the woman. At the same time how can a patient fully consent to something if they do not truly understand what is going to happen or the risks?

Furthermore, the exact manner in which a doctor or genetic counselor introduces the concept of prenatal testing or delivers the results is also a reflection of what is thought to be desired from the future mother. Offer value charged data in a value-neutral manner is supposed to be the role of doctors and genetic counseling when they offer prenatal testing and the results. In the film we saw how in reality it is not clear how neutral professionals can be specifically in how they present the information to these women,as they explained their doctors told them I have “terrible news or great news” when sharing diagnostic testing results.  This leads to the stigma against women that chose to have kids with down syndrome. A women from the film after stating to a nurse that she might not get an abortion the nurse responded “How would you feel if you had down syndrome?” This clashing of views is shown in the film where the woman supporting a movement for people birth with different genetic disorders, felt that as these children grow up they should be more accepted in society.

Additionally, Rapp explores what she labels “the imaginary” to describe the  what if thoughts as women go through the decision making process. The viewer saw this first hand in the film as women described what they would do if their fetus tested positive for down syndrome. This section of the film and book showed how important selective abortion is in these cases.  These women who have already done the pre-natal testing as explained in the film are in a unique position as they have to think about having an abortion from a mother’s point of view. During this period it forced the women to confront any preconceived notions they may have about children with down syndrome or other birth abnormalities, while also contemplating if they would be able to be a mother to a child with birth abnormalities. The mothers from the film echoed some of the same concerns of the women Rapp interviewed in her book. Some women did not want to seem selfish, but they also did not believe that they would ever achieve a sense of normalcy after giving birth to a child with a genetic disorder, such as a woman that worked full time. On the other hand some women wanted to know the quality of life their future child might have living with a genetic disorder. These two reflections are not mutually exclusive as this can be seen in the African-American women from the film and read in brief interviews from different mothers. The African-American woman from the film felt like the books and films that she had seen only showed the “good” side of raising a child with down syndrome. She used the word glorified, explaining that she felt like they did show her the bad side. One quote from her that caught my attention was “there are enough prejudices in this world”. As an African- American woman I can assume that she was alluding to the struggles her son would have to face as a black man, and on top of that the struggles of a growing up with down syndrome. She was also the only woman to specifically bring up the financial aspects of raising a child with down syndrome in the film. She was unclear of the costs of raising a child with down syndrome and if she would be able to afford it. There was a woman from the book that was not able to get the prenatal testing done until her doctor labeled her a high risk before her insurance would cover the costs.

In the end, Rayna Rapp’s book and the Burden of Knowledge film demonstrates that the decisions and the moral dilemma being made is not an easy decision.  Each woman expressed different reasons as to why they would do what they chose to do for prenatal testing. Decision making is not just only up to the mother or father, it can be influenced by family,close friends, and other life experiences. These factors all affect a person’s morals that are shaped by experiences. A person does not truly know how they might respond in a given situation until they face the same circumstances.

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Prenatal Testing and the Multi-layered Dilemma

The film “burden of knowledge” explores the moral dilemmas arising from the spread of prenatal testing that might lead to termination of pregnancy for fetuses with “abnormality”. Through interviews with multiple couples who participated in the prenatal test holding different perspectives and experts in the field of prenatal testing, the film attempts to provide a multi-faceted perspective on the burden comes with the knowledge of the fetus status to women and their spouse, raising an important question about the moral responsibility of pregnancy and the boundary of knowledge. Similarly, in the book “Testing Women, Testing the Fetus”, Rapp analyzed the social impacts and the cultural meaning of the advancement of prenatal testing technology by introducing communicative and practical problems posed by the technology from various perspectives (pregnant women and their families, experts in the prenatal testing fields, other parents of children with disability that could be diagnosed, etc). By providing and analyzing the complex implications of prenatal testing from various perspectives, Rapp illustrated a holistic view of the meaning of having this technology in a social context. Due to the amount of information provided in the book, I will pick out a few examples mentioned in the book and connect it to ideas in the film for the blog post. 

The decision-making process to terminate a fetus with a potential disability based on prenatal test results is highly complicated: it’s a combination of the pregnant women’s socioeconomic status, cultural/religious backgrounds, and ultimately theirs and their families’ worldviews. Socioeconomic status plays a critical role in this situation in which the upbringing of a Down’s Syndrome child would require more resources than a child without Down’s Syndrome. For example, in the film, one lady who decided to terminate her pregnancy because of the positive prenatal testing result for Down’s Syndrome reflected on her thought process of termination of her pregnancy: “if the child is very severe, how would my medical insurance cover…How much of it would they consider a life-time deal?…” Moreover, the cultural background the mother is from is another important factor influencing the decision from the very beginning of entering genetic counseling service to the final decision-making. The book mentions that the culturally constructed interpretation of the language used by genetic counselors when providing counseling might differ, which will influence the couple’s decision of whether to use prenatal testing in the first place (Rapp 84). The termination of pregnancy at a later stage can be culturally constructed: In rural China under the one-child policy, the commonly held view of valuing male offsprings more than female offsprings makes the gender of the baby a “defect,” thus making gender a reason for abortion. Another interesting facet of both the film and the book brought up is that the societal definition, perception, and the individual’s definition of disability have influenced the decision over whether abortion or not. The socially constructed definition of Down’s Syndrome leads to the stigma against Down’s Syndrome, which will heavily influence pregnancy termination. 

As both of the film and the book mention, prenatal testing puts pregnant women on the spot of a moral pioneer in which they are forced onto the position of a mother to decide what’s the best living condition for their children taking all facets into account. In the case of fetuses that are tested with a potential abnormality, the question is whether pregnant women decide whether the child is worth living, which raises a moral dilemma: does the mother have the right to terminate a pregnancy based on the results of prenatal testing and the advice of genetic counselors? How much agency should the mothers give to the genetic counselors and test results to make this decision? The book mentions that “Down’s child accounts for approximately only half of the positive test results,” meaning that the results might lead to false termination of a perfectly healthy baby. Moreover, the way many genetic counselors define Down syndrome children as having “menstrual retardation” blurs the variation within the Down’s syndrome children: some of Down’s syndrome children might only have mild retardation. The definition the genetic counselors use to explain Down’s syndrome can skew the couple’s decision towards the termination of the fetus (Rapp 90). 

Going back to the original moral dilemma: Should fetuses with “abnormality” be terminated? No one has a definitive answer to that. At the end of the day, it remains a highly personal choice for pregnant women and their families. The book elaborated on this elegantly: “the hegemony of the scientific model can never be absolute: the practical conceptions of heredity, maternal responsibility, and disability are also layered with many meanings other than those that the genetic counselors can describe.” (Rapp 78). However, a notion of discomfort, along with the decisions brought up in the film, is worth noting. As one of the genetic counselors featured in the movie said: “Every prenatal test and decisions should make us uncomfortable first.” Regardless of the final decision of whether to terminate abnormal pregnancy, one should always understand the burden of deciding a fetuses’ life, and the costs come with the knowledge of prenatal testing results. Such a burden of knowledge ought to make anyone uncomfortable. 

Last but not least, it’s worth bringing up a question that we don’t answer for: How much knowledge is to be considered a burden? Knowledge is a double-bladed knife that can do good and harm at the same time. In the case of prenatal testing, knowing the potential disability of a child puts the burden of deciding pregnancy status on women. Is it better to know the risks and make a decision early, or is it better not to know and face the potential of regretting later? I don’t have an answer for that. However, as an aspiring neuroscience researcher interested in the anthropological perspective of science, one of my main takeaways is the understanding of how multi-layered impacts of a single advancement in technology can bring to our society. Science does not exist in a vacuum: it is always necessary to consider the holistic picture of the changes a technology could bring to our society and keep in mind the ethical questions arising from it as our science gets more advanced. 

References:

Emory Libraries Resources Terms of Use – Emory University Libraries, docuseek2.com.proxy.library.emory.edu/cart/product/1407.

Rapp, Rayna. Testing Women, Testing the Fetus: the Social Impact of Amniocentesis in America. Routledge, 2000.

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Natural Law and Reproductive Ethics – Ally Grubman

The advances in the field of reproductive technology have caused many questions to arise. With the advancements of this technology, many people are trying to develop a stronger understanding and awareness of their restrictions on the topic. Faithful and curious people have found it helpful to find answers in the things they know, such as what is believed in their religion. 

Each religion has different sentiments on the new reproductive technologies. For instance, the Roman Catholic Church revealed their perception of topics like IVF and surrogacy through “Instruction on Respect for Human Life in Its Origin and on the Dignity of Procreation”. Throughout this, Donum Vitae answers common questions that they have been encountering since the revelation of these new reproductive technologies. Mainly, this doctrine argues that a child can only be brought into this world through procreation between a husband and wife, and unless it is to keep the fetus alive, no other measures can be taken.

“Respect for Human Life in Its Origin and on the Dignity of Procreation” is based on an interpretation of the Book of Genesis. The beginning of the Book of Genesis illustrates the creation of the world, starting with light and ending with people. The man and woman God created were unique in that they were shaped to mirror God’s image and blessed to have the command and a sort of power over the living creatures of the earth, a gift that no other living thing was given. The man and his wife were told to “‘be fruitful and multiply’”, blessing them with the ability to have children and fill the earth (Genesis, 1:28). The text also declares, “a man leaves his father and his mother and clings to his wife, and they become one flesh,” which the Roman Catholic Church views as God’s image of marriage, between a woman and man (Genesis, 2:24). While the text can be indeterminate and ambiguous, Donum Vitae interprets this to mean that only a man and his wife should reproduce and that they will then become kin. 

Donum Vitae’s perspective on the topic is that procedures and techniques that “dominate the processes of procreation… can enable man to ‘take in hand his own destiny,’ but they also expose him ‘to the temptation to go beyond the limits of a reasonable dominion over nature‘“ (Donum Vitae, 141). It is clear here that they are not only taking the stance on the “natural act” of procreation between a heterologous married couple but also that there is a human right for a child to know and be raised by their biological parents. “It is through the secure and recognized relationship to his own parents that the child can discover his own identity and achieve his own proper human development” (Donum Vitae, 158). Here, they purposefully say his own parents, emphasizing the need for a child to be born from and raised by his/her original, genetic parents. This postulates a contrasting idea from what we have encountered through the readings in the past modules. 

Susan Martha Kahn finds a different perspective when researching and interviewing Israeli women who had gone or were planning on going through different reproductive procedures to have a child, such as artificial insemination. Through her novel, Reproducing Jews: A Cultural Account of Assisted Conception in Israel, Kahn uncovers that most unmarried women she interviewed in Israel, whether they be straight or lesbian, had received the necessary support from their family, peers, religious figures, and medical team. While some women were expecting judgment and ridicule for their decision to have a child out of wedlock, most were met with surprising approval and encouragement. In Israel, “an unmarried woman’s right to become a mother through artificial insemination not only does not threaten ‘the delicate fabric of society,’ it is guaranteed as part of her basic right to privacy” (Kahn, 77). Judaism focuses not on how the child is created but more on how the child is brought up and loved by their family, whether that be a genetic family or not. The importance to reproduce within the Jewish culture allows for the opportunity for women to use other methods of conception to fulfill their want/need for a child. This highlights the differences in religious interpretations of the new reproductive technologies and assisted conception. This is a drastically different view from the Roman Catholic Church’s perspective. Seeing this radical difference between the two allows the reader a chance to understand where each comes from and how people make the decisions that they do in regards to the reproductive technologies available today.

Professor Seeman goes even deeper beyond this, explaining why different religions, such as Judaism and Christianity, have discrete views when looking into reproductive technologies. He explains that “Jewish law tends to derive not from the open-ended narrative analysis favored by many Christian ethical writers, but from a more formal and abstract notion of discrete and bounded legal prohibitions… that constitute a negative limit for human behavior rather than an simulacra of some positive ethical ideal (Seeman, 349). Professor Seeman also postulates that each different society, country, and religion have come to their own decisions based on their own cultures rather than the new advances themselves. In most cultures, the laws are mostly influenced by sociological and historical factors. This is the same idea as to when we were talking about the definition of kinship. Because this reproductive technology shapes kinship, it makes sense that they would both have a similar idea behind them: that there isn’t one right answer or one definition. “Ethics cannot be reduced to a purely technical craft so long as moral interpretation and human experience remain decisively open-ended” (Seeman, 359). Each individual’s definitions and opinions are incredibly subjective and are configured around their life experiences. 

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Kinship Narratives and New Reproductive Technologies

Through the extensive ethnographic inquiry and “thick description” of the Module 2 readings, we can see the various ways narratives of kinship effect and shape reproductive decision-making across the globe. Although the calculus behind kinship is widely debated, kinship relationships are foundational to both marriage and reproduction, as well as society as a whole. From an evolutionary psychology perspective, “kinship is defined in terms of genetic relatedness…” where “you’re either someone’s mother or you aren’t” (McKinnon 107). As such, evolutionary psychologists assert “a direct link between kinship categories and biological relatedness…” (McKinnon 109). In contrast to this perspective, however, ‘constructionists’ like McKinnon view genetics as but one mode through which kinship relations are formed. Under this conception of kinship, “the fact of ‘treating one another well’ says it all: the relationship is created and maintained by acts of nurturance and solicitude…” (McKinnon 111). Through patterns of altruism, nurturance, and an allocation of resources, then, kinship transcends the bounds of any one genetic relationship. 

Although McKinnon provides the multifaceted use of kinship vocabulary as evidence that “the mind is a flexible and creative tool capable of creating diverse cultural forms” – where a female child may be addressed as ‘mother’ or a surrogate father as ‘dad’ – Shapiro asserts that such extensions “are grounded in native appreciations of procreation…” (Shapiro 140). While such kinship vocabulary necessarily extends beyond biology, Shapiro argues that kinship is, nevertheless, dependent upon, and therefore derived from, genetic calculi.

Kinship narratives such as these play a particularly prominent role in shaping cultural attitudes towards adoption, IVF, birth-control, and other reproductive technologies. Throughout the Muslim world, “attitudes toward family formation are closely tied to religious teachings that stress the importance of ‘purity of lineage,’” posing a quandary for couples faced with infertility. For both Shi’ites and Sunnis, “the very concept of social parenthood is culturally contingent and is deeply embedded in ‘local moral worlds,’…[which] govern ideas about the parenting of ‘nonbiological children, including those conceived through biotechnological means” (Inhorn 96). As such, many of the men discussed “could not accept the idea of social fatherhood – arguing that an adopted or donor child ‘won’t be my son’…” (Inhorn 98). Especially among Sunni men, genetic relationship is closely tied to kinship. 

Likewise, kinship also plays a prominent role in shaping the reproductive practices of Orthodox Jews, shaping the ways in which they navigate the tension between the traditionally divine realm of procreation and “the ability to take charge of and fully mange reproduction” (Taragin-Zeller 372). Through the construction of a middle-ground or grey-area of decision-making, many of Taragin-Zeller’s interviewees coped with the anxieties of reproduction, as well as the tension it posed against their faith, by constructing “a decision-making apparatus that takes into consideration the desires of the self, communal mores, and the input of external players,” the most important of which being God (Taragin-Zeller 379). 

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What is kinship?

Religion 358 Summer 2020 Module 2 Ro Rollings

Kinship is difficult to define.  Even experts disagree.  The dilemma is that an observer is limited by their own experience and training. “We don’t see things as they are; we see them as we are” is a suitable quote assigned to Anaïs Nin and Talmudic origin. Thus when Susan McKinnon critiques evolutionary psychologists such as Steven Pinker, she is shaped by her training, her world view and experiences.  That Warren Shapiro would similarly counter her arguments from his completely different perspective is not surprising.  Even the middle path espoused by Robert Parkin has limitations, just as a referee can only see what is in their field of view and understanding.  Perhaps this is why Tibetan medical physicians quiet their minds and bodies prior to undertaking the examination of the patient. The topic of kinship in the context of bioethics is an intensely real and personal issue. As pointed out in the readings from Inhorn and Taragin-Zeller, the issues of kinship become paramount in the study of reproduction, particularly in light of the advances in medical technology.  These cultural considerations are critical to acquiring and processing the data as multiple disciplines must be coordinated in order to address the real needs of diverse populations undergoing constant dynamic change and transformation.  Assumptions can be blinding through any lens.  In each article for Module 2, the author’s experience and research is both enlightening and limiting.  The spectrum of humanity is tremendously complex and the reason there are so many different disciplines is because each context is multidimensional. In this diverse group of readings, kinship appears to be revealed as exceedingly personal.  No one article or point of view can ever entirely suffice, no more than it would in any other academic discipline.  As such, Susan Kahn does the best job of establishing the landscape and perspective for insight in her Introduction to her book in which she generously acknowledges her contributors, advisors and inspirations at the outset.

Addendum: “The art of medicine, is the mastery of chaos” was the leading quote to my 1984 handbook Facts and Formulas created for medical students and house-staff.  Each fact and formula was cited from the original scientific articles.  The final quote and warning was nested on the final page:  “To be ignorant of one’s ignorance, is the malady of the ignorant.”(Amos Bronson Alcott)

Image: As Jack Webb in Dragnet remarked, “Just the facts, Ma’am.”https://www.sbs.com.au/guide/article/2016/10/12/just-facts-maam-tv-cop-procedurals-dragnet-deep-water

1. S􏰀usan McKinnon, 􏰁On Kinship and Marriage: A Critique􏰀e of the Genetic and Gender Calcu􏰀lu􏰀s of Ev􏰄ol􏰀utionar􏰇y Ps􏰇ycholog􏰇y,􏰂 In S. McKinnon and S. Sil􏰄verman editors, Complexities: Beyond Nature and Nurture, 106-131 (Chicago: University of Chicago Press, 2005). 

2.Warren Shapiro, 􏰁What H􏰀man Kinship is Primarily􏰇 Abo􏰀ut: To􏰃wards a Critiq􏰀e of the Ne􏰃 Kinship St􏰀dies.􏰂 Social Anthropology (2008) 16: 137-153. 

2. a. Robert Parkin, What Shapiro and McKinnon are all about, and why kinship still needs anthropologists. Social Anthropology/Anthropology Social (2009) 17, 2 158–170 

3. Marcia Inhorn, He Won􏰆t Be M􏰇 Son: Middle Eastern Men􏰆s Discourses of Gamete Donation.􏰂 Medical Anthropology􏰇 Q􏰀uarterly􏰇 20 (2006): 94-120. 

4. Lea Taragin-Zeller (2019) 􏰁Conceiv􏰄ing God􏰆s Children􏰂: Tow􏰃ard a Flex􏰈ible Model of Reproductive Decision-Making, Medical Anthropology, 38:4, 370-383.

5. Susan Martha Kahn, Reproducing Jews: A Cultural Account of Assisted Conception in Israel (Duke University Press, 2000). 

6. Anaïs Nin did employ this statement in her 1961 work “Seduction of the Minotaur”.

7. Robert Rollings, Facts and Formulas, 1984(self published)

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