Academic literature on the topic 'Behavioral factors are the most factors control bird to life and its welfare'

Approximately 100 million elderly will enter Medicare over the next 25 years. We consider the potential benefits of interventions that would reduce or eliminate the most important risk factors for disease and spending. Effective control of hypertension could reduce health care spending $890 billion for these cohorts while adding 75 million disability-adjusted life years (DALYs). Eliminating diabetes would add 90 million life-year equivalents at a cost of $2,761 per DALY. Reducing obesity back to levels seen in the 1980's would have little effect on mortality, but yields great improvements in morbidity (especially heart disease and diabetes) with a cost savings of over $1 trillion. Smoking cessation will have the smallest impact, adding 32 million DALYs at a cost of $9.045 per DALY. While smoking cessation reduces lung disease and lung cancer, but these are relatively low prevalence compared to the other diseases. Its impact on heart disease is negligible. The effects on overall social welfare are unknown, since we do not estimate the costs of these interventions, the costs of any behavioral modification, or the welfare loss due to providers from lower medical spending.

Photo ID 158378414 © Eduard Muzhevskyi | Dreamstime.com ABSTRACT There is a debate about the ethical implications of using human embryos in stem cell research, which can be influenced by cultural, moral, and social values. This paper argues for an adaptable framework to accommodate diverse cultural and religious perspectives. By using an adaptive ethics model, research protections can reflect various populations and foster growth in stem cell research possibilities. INTRODUCTION Stem cell research combines biology, medicine, and technology, promising to alter health care and the understanding of human development. Yet, ethical contention exists because of individuals’ perceptions of using human embryos based on their various cultural, moral, and social values. While these disagreements concerning policy, use, and general acceptance have prompted the development of an international ethics policy, such a uniform approach can overlook the nuanced ethical landscapes between cultures. With diverse viewpoints in public health, a single global policy, especially one reflecting Western ethics or the ethics prevalent in high-income countries, is impractical. This paper argues for a culturally sensitive, adaptable framework for the use of embryonic stem cells. Stem cell policy should accommodate varying ethical viewpoints and promote an effective global dialogue. With an extension of an ethics model that can adapt to various cultures, we recommend localized guidelines that reflect the moral views of the people those guidelines serve. BACKGROUND Stem cells, characterized by their unique ability to differentiate into various cell types, enable the repair or replacement of damaged tissues. Two primary types of stem cells are somatic stem cells (adult stem cells) and embryonic stem cells. Adult stem cells exist in developed tissues and maintain the body’s repair processes.[1] Embryonic stem cells (ESC) are remarkably pluripotent or versatile, making them valuable in research.[2] However, the use of ESCs has sparked ethics debates. Considering the potential of embryonic stem cells, research guidelines are essential. The International Society for Stem Cell Research (ISSCR) provides international stem cell research guidelines. They call for “public conversations touching on the scientific significance as well as the societal and ethical issues raised by ESC research.”[3] The ISSCR also publishes updates about culturing human embryos 14 days post fertilization, suggesting local policies and regulations should continue to evolve as ESC research develops.[4] Like the ISSCR, which calls for local law and policy to adapt to developing stem cell research given cultural acceptance, this paper highlights the importance of local social factors such as religion and culture. I. Global Cultural Perspective of Embryonic Stem Cells Views on ESCs vary throughout the world. Some countries readily embrace stem cell research and therapies, while others have stricter regulations due to ethical concerns surrounding embryonic stem cells and when an embryo becomes entitled to moral consideration. The philosophical issue of when the “someone” begins to be a human after fertilization, in the morally relevant sense,[5] impacts when an embryo becomes not just worthy of protection but morally entitled to it. The process of creating embryonic stem cell lines involves the destruction of the embryos for research.[6] Consequently, global engagement in ESC research depends on social-cultural acceptability. a. US and Rights-Based Cultures In the United States, attitudes toward stem cell therapies are diverse. The ethics and social approaches, which value individualism,[7] trigger debates regarding the destruction of human embryos, creating a complex regulatory environment. For example, the 1996 Dickey-Wicker Amendment prohibited federal funding for the creation of embryos for research and the destruction of embryos for “more than allowed for research on fetuses in utero.”[8] Following suit, in 2001, the Bush Administration heavily restricted stem cell lines for research. However, the Stem Cell Research Enhancement Act of 2005 was proposed to help develop ESC research but was ultimately vetoed.[9] Under the Obama administration, in 2009, an executive order lifted restrictions allowing for more development in this field.[10] The flux of research capacity and funding parallels the different cultural perceptions of human dignity of the embryo and how it is socially presented within the country’s research culture.[11] b. Ubuntu and Collective Cultures African bioethics differs from Western individualism because of the different traditions and values. African traditions, as described by individuals from South Africa and supported by some studies in other African countries, including Ghana and Kenya, follow the African moral philosophies of Ubuntu or Botho and Ukama, which “advocates for a form of wholeness that comes through one’s relationship and connectedness with other people in the society,”[12] making autonomy a socially collective concept. In this context, for the community to act autonomously, individuals would come together to decide what is best for the collective. Thus, stem cell research would require examining the value of the research to society as a whole and the use of the embryos as a collective societal resource. If society views the source as part of the collective whole, and opposes using stem cells, compromising the cultural values to pursue research may cause social detachment and stunt research growth.[13] Based on local culture and moral philosophy, the permissibility of stem cell research depends on how embryo, stem cell, and cell line therapies relate to the community as a whole. Ubuntu is the expression of humanness, with the person’s identity drawn from the “’I am because we are’” value.[14] The decision in a collectivistic culture becomes one born of cultural context, and individual decisions give deference to others in the society. Consent differs in cultures where thought and moral philosophy are based on a collective paradigm. So, applying Western bioethical concepts is unrealistic. For one, Africa is a diverse continent with many countries with different belief systems, access to health care, and reliance on traditional or Western medicines. Where traditional medicine is the primary treatment, the “’restrictive focus on biomedically-related bioethics’” [is] problematic in African contexts because it neglects bioethical issues raised by traditional systems.”[15] No single approach applies in all areas or contexts. Rather than evaluating the permissibility of ESC research according to Western concepts such as the four principles approach, different ethics approaches should prevail. Another consideration is the socio-economic standing of countries. In parts of South Africa, researchers have not focused heavily on contributing to the stem cell discourse, either because it is not considered health care or a health science priority or because resources are unavailable.[16] Each country’s priorities differ given different social, political, and economic factors. In South Africa, for instance, areas such as maternal mortality, non-communicable diseases, telemedicine, and the strength of health systems need improvement and require more focus[17] Stem cell research could benefit the population, but it also could divert resources from basic medical care. Researchers in South Africa adhere to the National Health Act and Medicines Control Act in South Africa and international guidelines; however, the Act is not strictly enforced, and there is no clear legislation for research conduct or ethical guidelines.[18] Some parts of Africa condemn stem cell research. For example, 98.2 percent of the Tunisian population is Muslim.[19] Tunisia does not permit stem cell research because of moral conflict with a Fatwa. Religion heavily saturates the regulation and direction of research.[20] Stem cell use became permissible for reproductive purposes only recently, with tight restrictions preventing cells from being used in any research other than procedures concerning ART/IVF. Their use is conditioned on consent, and available only to married couples.[21] The community's receptiveness to stem cell research depends on including communitarian African ethics. c. Asia Some Asian countries also have a collective model of ethics and decision making.[22] In China, the ethics model promotes a sincere respect for life or human dignity,[23] based on protective medicine. This model, influenced by Traditional Chinese Medicine (TCM), [24] recognizes Qi as the vital energy delivered via the meridians of the body; it connects illness to body systems, the body’s entire constitution, and the universe for a holistic bond of nature, health, and quality of life.[25] Following a protective ethics model, and traditional customs of wholeness, investment in stem cell research is heavily desired for its applications in regenerative therapies, disease modeling, and protective medicines. In a survey of medical students and healthcare practitioners, 30.8 percent considered stem cell research morally unacceptable while 63.5 percent accepted medical research using human embryonic stem cells. Of these individuals, 89.9 percent supported increased funding for stem cell research.[26] The scientific community might not reflect the overall population. From 1997 to 2019, China spent a total of $576 million (USD) on stem cell research at 8,050 stem cell programs, increased published presence from 0.6 percent to 14.01 percent of total global stem cell publications as of 2014, and made significant strides in cell-based therapies for various medical conditions.[27] However, while China has made substantial investments in stem cell research and achieved notable progress in clinical applications, concerns linger regarding ethical oversight and transparency.[28] For example, the China Biosecurity Law, promoted by the National Health Commission and China Hospital Association, attempted to mitigate risks by introducing an institutional review board (IRB) in the regulatory bodies. 5800 IRBs registered with the Chinese Clinical Trial Registry since 2021.[29] However, issues still need to be addressed in implementing effective IRB review and approval procedures. The substantial government funding and focus on scientific advancement have sometimes overshadowed considerations of regional cultures, ethnic minorities, and individual perspectives, particularly evident during the one-child policy era. As government policy adapts to promote public stability, such as the change from the one-child to the two-child policy,[30] research ethics should also adapt to ensure respect for the values of its represented peoples. Japan is also relatively supportive of stem cell research and therapies. Japan has a more transparent regulatory framework, allowing for faster approval of regenerative medicine products, which has led to several advanced clinical trials and therapies.[31] South Korea is also actively engaged in stem cell research and has a history of breakthroughs in cloning and embryonic stem cells.[32] However, the field is controversial, and there are issues of scientific integrity. For example, the Korean FDA fast-tracked products for approval,[33] and in another instance, the oocyte source was unclear and possibly violated ethical standards.[34] Trust is important in research, as it builds collaborative foundations between colleagues, trial participant comfort, open-mindedness for complicated and sensitive discussions, and supports regulatory procedures for stakeholders. There is a need to respect the culture’s interest, engagement, and for research and clinical trials to be transparent and have ethical oversight to promote global research discourse and trust. d. Middle East Countries in the Middle East have varying degrees of acceptance of or restrictions to policies related to using embryonic stem cells due to cultural and religious influences. Saudi Arabia has made significant contributions to stem cell research, and conducts research based on international guidelines for ethical conduct and under strict adherence to guidelines in accordance with Islamic principles. Specifically, the Saudi government and people require ESC research to adhere to Sharia law. In addition to umbilical and placental stem cells,[35] Saudi Arabia permits the use of embryonic stem cells as long as they come from miscarriages, therapeutic abortions permissible by Sharia law, or are left over from in vitro fertilization and donated to research.[36] Laws and ethical guidelines for stem cell research allow the development of research institutions such as the King Abdullah International Medical Research Center, which has a cord blood bank and a stem cell registry with nearly 10,000 donors.[37] Such volume and acceptance are due to the ethical ‘permissibility’ of the donor sources, which do not conflict with religious pillars. However, some researchers err on the side of caution, choosing not to use embryos or fetal tissue as they feel it is unethical to do so.[38] Jordan has a positive research ethics culture.[39] However, there is a significant issue of lack of trust in researchers, with 45.23 percent (38.66 percent agreeing and 6.57 percent strongly agreeing) of Jordanians holding a low level of trust in researchers, compared to 81.34 percent of Jordanians agreeing that they feel safe to participate in a research trial.[40] Safety testifies to the feeling of confidence that adequate measures are in place to protect participants from harm, whereas trust in researchers could represent the confidence in researchers to act in the participants’ best interests, adhere to ethical guidelines, provide accurate information, and respect participants’ rights and dignity. One method to improve trust would be to address communication issues relevant to ESC. Legislation surrounding stem cell research has adopted specific language, especially concerning clarification “between ‘stem cells’ and ‘embryonic stem cells’” in translation.[41] Furthermore, legislation “mandates the creation of a national committee… laying out specific regulations for stem-cell banking in accordance with international standards.”[42] This broad regulation opens the door for future global engagement and maintains transparency. However, these regulations may also constrain the influence of research direction, pace, and accessibility of research outcomes. e. Europe In the European Union (EU), ethics is also principle-based, but the principles of autonomy, dignity, integrity, and vulnerability are interconnected.[43] As such, the opportunity for cohesion and concessions between individuals’ thoughts and ideals allows for a more adaptable ethics model due to the flexible principles that relate to the human experience The EU has put forth a framework in its Convention for the Protection of Human Rights and Dignity of the Human Being allowing member states to take different approaches. Each European state applies these principles to its specific conventions, leading to or reflecting different acceptance levels of stem cell research. [44] For example, in Germany, Lebenzusammenhang, or the coherence of life, references integrity in the unity of human culture. Namely, the personal sphere “should not be subject to external intervention.”[45] Stem cell interventions could affect this concept of bodily completeness, leading to heavy restrictions. Under the Grundgesetz, human dignity and the right to life with physical integrity are paramount.[46] The Embryo Protection Act of 1991 made producing cell lines illegal. Cell lines can be imported if approved by the Central Ethics Commission for Stem Cell Research only if they were derived before May 2007.[47] Stem cell research respects the integrity of life for the embryo with heavy specifications and intense oversight. This is vastly different in Finland, where the regulatory bodies find research more permissible in IVF excess, but only up to 14 days after fertilization.[48] Spain’s approach differs still, with a comprehensive regulatory framework.[49] Thus, research regulation can be culture-specific due to variations in applied principles. Diverse cultures call for various approaches to ethical permissibility.[50] Only an adaptive-deliberative model can address the cultural constructions of self and achieve positive, culturally sensitive stem cell research practices.[51] II. Religious Perspectives on ESC Embryonic stem cell sources are the main consideration within religious contexts. While individuals may not regard their own religious texts as authoritative or factual, religion can shape their foundations or perspectives. The Qur'an states: “And indeed We created man from a quintessence of clay. Then We placed within him a small quantity of nutfa (sperm to fertilize) in a safe place. Then We have fashioned the nutfa into an ‘alaqa (clinging clot or cell cluster), then We developed the ‘alaqa into mudgha (a lump of flesh), and We made mudgha into bones, and clothed the bones with flesh, then We brought it into being as a new creation. So Blessed is Allah, the Best of Creators.”[52] Many scholars of Islam estimate the time of soul installment, marked by the angel breathing in the soul to bring the individual into creation, as 120 days from conception.[53] Personhood begins at this point, and the value of life would prohibit research or experimentation that could harm the individual. If the fetus is more than 120 days old, the time ensoulment is interpreted to occur according to Islamic law, abortion is no longer permissible.[54] There are a few opposing opinions about early embryos in Islamic traditions. According to some Islamic theologians, there is no ensoulment of the early embryo, which is the source of stem cells for ESC research.[55] In Buddhism, the stance on stem cell research is not settled. The main tenets, the prohibition against harming or destroying others (ahimsa) and the pursuit of knowledge (prajña) and compassion (karuna), leave Buddhist scholars and communities divided.[56] Some scholars argue stem cell research is in accordance with the Buddhist tenet of seeking knowledge and ending human suffering. Others feel it violates the principle of not harming others. Finding the balance between these two points relies on the karmic burden of Buddhist morality. In trying to prevent ahimsa towards the embryo, Buddhist scholars suggest that to comply with Buddhist tenets, research cannot be done as the embryo has personhood at the moment of conception and would reincarnate immediately, harming the individual's ability to build their karmic burden.[57] On the other hand, the Bodhisattvas, those considered to be on the path to enlightenment or Nirvana, have given organs and flesh to others to help alleviate grieving and to benefit all.[58] Acceptance varies on applied beliefs and interpretations. Catholicism does not support embryonic stem cell research, as it entails creation or destruction of human embryos. This destruction conflicts with the belief in the sanctity of life. For example, in the Old Testament, Genesis describes humanity as being created in God’s image and multiplying on the Earth, referencing the sacred rights to human conception and the purpose of development and life. In the Ten Commandments, the tenet that one should not kill has numerous interpretations where killing could mean murder or shedding of the sanctity of life, demonstrating the high value of human personhood. In other books, the theological conception of when life begins is interpreted as in utero,[59] highlighting the inviolability of life and its formation in vivo to make a religious point for accepting such research as relatively limited, if at all.[60] The Vatican has released ethical directives to help apply a theological basis to modern-day conflicts. The Magisterium of the Church states that “unless there is a moral certainty of not causing harm,” experimentation on fetuses, fertilized cells, stem cells, or embryos constitutes a crime.[61] Such procedures would not respect the human person who exists at these stages, according to Catholicism. Damages to the embryo are considered gravely immoral and illicit.[62] Although the Catholic Church officially opposes abortion, surveys demonstrate that many Catholic people hold pro-choice views, whether due to the context of conception, stage of pregnancy, threat to the mother’s life, or for other reasons, demonstrating that practicing members can also accept some but not all tenets.[63] Some major Jewish denominations, such as the Reform, Conservative, and Reconstructionist movements, are open to supporting ESC use or research as long as it is for saving a life.[64] Within Judaism, the Talmud, or study, gives personhood to the child at birth and emphasizes that life does not begin at conception:[65] “If she is found pregnant, until the fortieth day it is mere fluid,”[66] Whereas most religions prioritize the status of human embryos, the Halakah (Jewish religious law) states that to save one life, most other religious laws can be ignored because it is in pursuit of preservation.[67] Stem cell research is accepted due to application of these religious laws. We recognize that all religions contain subsets and sects. The variety of environmental and cultural differences within religious groups requires further analysis to respect the flexibility of religious thoughts and practices. We make no presumptions that all cultures require notions of autonomy or morality as under the common morality theory, which asserts a set of universal moral norms that all individuals share provides moral reasoning and guides ethical decisions.[68] We only wish to show that the interaction with morality varies between cultures and countries. III. A Flexible Ethical Approach The plurality of different moral approaches described above demonstrates that there can be no universally acceptable uniform law for ESC on a global scale. Instead of developing one standard, flexible ethical applications must be continued. We recommend local guidelines that incorporate important cultural and ethical priorities. While the Declaration of Helsinki is more relevant to people in clinical trials receiving ESC products, in keeping with the tradition of protections for research subjects, consent of the donor is an ethical requirement for ESC donation in many jurisdictions including the US, Canada, and Europe.[69] The Declaration of Helsinki provides a reference point for regulatory standards and could potentially be used as a universal baseline for obtaining consent prior to gamete or embryo donation. For instance, in Columbia University’s egg donor program for stem cell research, donors followed standard screening protocols and “underwent counseling sessions that included information as to the purpose of oocyte donation for research, what the oocytes would be used for, the risks and benefits of donation, and process of oocyte stimulation” to ensure transparency for consent.[70] The program helped advance stem cell research and provided clear and safe research methods with paid participants. Though paid participation or covering costs of incidental expenses may not be socially acceptable in every culture or context,[71] and creating embryos for ESC research is illegal in many jurisdictions, Columbia’s program was effective because of the clear and honest communications with donors, IRBs, and related stakeholders. This example demonstrates that cultural acceptance of scientific research and of the idea that an egg or embryo does not have personhood is likely behind societal acceptance of donating eggs for ESC research. As noted, many countries do not permit the creation of embryos for research. Proper communication and education regarding the process and purpose of stem cell research may bolster comprehension and garner more acceptance. “Given the sensitive subject material, a complete consent process can support voluntary participation through trust, understanding, and ethical norms from the cultures and morals participants value. This can be hard for researchers entering countries of different socioeconomic stability, with different languages and different societal values.[72] An adequate moral foundation in medical ethics is derived from the cultural and religious basis that informs knowledge and actions.[73] Understanding local cultural and religious values and their impact on research could help researchers develop humility and promote inclusion. IV. Concerns Some may argue that if researchers all adhere to one ethics standard, protection will be satisfied across all borders, and the global public will trust researchers. However, defining what needs to be protected and how to define such research standards is very specific to the people to which standards are applied. We suggest that applying one uniform guide cannot accurately protect each individual because we all possess our own perceptions and interpretations of social values.[74] Therefore, the issue of not adjusting to the moral pluralism between peoples in applying one standard of ethics can be resolved by building out ethics models that can be adapted to different cultures and religions. Other concerns include medical tourism, which may promote health inequities.[75] Some countries may develop and approve products derived from ESC research before others, compromising research ethics or drug approval processes. There are also concerns about the sale of unauthorized stem cell treatments, for example, those without FDA approval in the United States. Countries with robust research infrastructures may be tempted to attract medical tourists, and some customers will have false hopes based on aggressive publicity of unproven treatments.[76] For example, in China, stem cell clinics can market to foreign clients who are not protected under the regulatory regimes. Companies employ a marketing strategy of “ethically friendly” therapies. Specifically, in the case of Beike, China’s leading stem cell tourism company and sprouting network, ethical oversight of administrators or health bureaus at one site has “the unintended consequence of shifting questionable activities to another node in Beike's diffuse network.”[77] In contrast, Jordan is aware of stem cell research’s potential abuse and its own status as a “health-care hub.” Jordan’s expanded regulations include preserving the interests of individuals in clinical trials and banning private companies from ESC research to preserve transparency and the integrity of research practices.[78] The social priorities of the community are also a concern. The ISSCR explicitly states that guidelines “should be periodically revised to accommodate scientific advances, new challenges, and evolving social priorities.”[79] The adaptable ethics model extends this consideration further by addressing whether research is warranted given the varying degrees of socioeconomic conditions, political stability, and healthcare accessibilities and limitations. An ethical approach would require discussion about resource allocation and appropriate distribution of funds.[80] CONCLUSION While some religions emphasize the sanctity of life from conception, which may lead to public opposition to ESC research, others encourage ESC research due to its potential for healing and alleviating human pain. Many countries have special regulations that balance local views on embryonic personhood, the benefits of research as individual or societal goods, and the protection of human research subjects. To foster understanding and constructive dialogue, global policy frameworks should prioritize the protection of universal human rights, transparency, and informed consent. In addition to these foundational global policies, we recommend tailoring local guidelines to reflect the diverse cultural and religious perspectives of the populations they govern. Ethics models should be adapted to local populations to effectively establish research protections, growth, and possibilities of stem cell research. For example, in countries with strong beliefs in the moral sanctity of embryos or heavy religious restrictions, an adaptive model can allow for discussion instead of immediate rejection. In countries with limited individual rights and voice in science policy, an adaptive model ensures cultural, moral, and religious views are taken into consideration, thereby building social inclusion. While this ethical consideration by the government may not give a complete voice to every individual, it will help balance policies and maintain the diverse perspectives of those it affects. Embracing an adaptive ethics model of ESC research promotes open-minded dialogue and respect for the importance of human belief and tradition. By actively engaging with cultural and religious values, researchers can better handle disagreements and promote ethical research practices that benefit each society. This brief exploration of the religious and cultural differences that impact ESC research reveals the nuances of relative ethics and highlights a need for local policymakers to apply a more intense adaptive model. - [1] Poliwoda, S., Noor, N., Downs, E., Schaaf, A., Cantwell, A., Ganti, L., Kaye, A. D., Mosel, L. I., Carroll, C. B., Viswanath, O., & Urits, I. (2022). Stem cells: a comprehensive review of origins and emerging clinical roles in medical practice. Orthopedic reviews, 14(3), 37498. https://doi.org/10.52965/001c.37498 [2] Poliwoda, S., Noor, N., Downs, E., Schaaf, A., Cantwell, A., Ganti, L., Kaye, A. D., Mosel, L. I., Carroll, C. B., Viswanath, O., & Urits, I. (2022). Stem cells: a comprehensive review of origins and emerging clinical roles in medical practice. Orthopedic reviews, 14(3), 37498. https://doi.org/10.52965/001c.37498 [3] International Society for Stem Cell Research. (2023). Laboratory-based human embryonic stem cell research, embryo research, and related research activities. International Society for Stem Cell Research. https://www.isscr.org/guidelines/blog-post-title-one-ed2td-6fcdk; Kimmelman, J., Hyun, I., Benvenisty, N. et al. Policy: Global standards for stem-cell research. Nature 533, 311–313 (2016). https://doi.org/10.1038/533311a [4] International Society for Stem Cell Research. (2023). Laboratory-based human embryonic stem cell research, embryo research, and related research activities. International Society for Stem Cell Research. https://www.isscr.org/guidelines/blog-post-title-one-ed2td-6fcdk [5] Concerning the moral philosophies of stem cell research, our paper does not posit a personal moral stance nor delve into the “when” of human life begins. To read further about the philosophical debate, consider the following sources: Sandel M. J. (2004). Embryo ethics--the moral logic of stem-cell research. The New England journal of medicine, 351(3), 207–209. https://doi.org/10.1056/NEJMp048145; George, R. P., & Lee, P. (2020, September 26). Acorns and Embryos. The New Atlantis. https://www.thenewatlantis.com/publications/acorns-and-embryos; Sagan, A., & Singer, P. (2007). The moral status of stem cells. Metaphilosophy, 38(2/3), 264–284. http://www.jstor.org/stable/24439776; McHugh P. R. (2004). Zygote and "clonote"--the ethical use of embryonic stem cells. The New England journal of medicine, 351(3), 209–211. https://doi.org/10.1056/NEJMp048147; Kurjak, A., & Tripalo, A. (2004). The facts and doubts about beginning of the human life and personality. Bosnian journal of basic medical sciences, 4(1), 5–14. https://doi.org/10.17305/bjbms.2004.3453 [6] Vazin, T., & Freed, W. J. (2010). Human embryonic stem cells: derivation, culture, and differentiation: a review. Restorative neurology and neuroscience, 28(4), 589–603. https://doi.org/10.3233/RNN-2010-0543 [7] Socially, at its core, the Western approach to ethics is widely principle-based, autonomy being one of the key factors to ensure a fundamental respect for persons within research. For information regarding autonomy in research, see: Department of Health, Education, and Welfare, & National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1978). The Belmont Report. Ethical principles and guidelines for the protection of human subjects of research.; For a more in-depth review of autonomy within the US, see: Beauchamp, T. L., & Childress, J. F. (1994). Principles of Biomedical Ethics. Oxford University Press. [8] Sherley v. Sebelius, 644 F.3d 388 (D.C. Cir. 2011), citing 45 C.F.R. 46.204(b) and [42 U.S.C. § 289g(b)]. https://www.cadc.uscourts.gov/internet/opinions.nsf/6c690438a9b43dd685257a64004ebf99/$file/11-5241-1391178.pdf [9] Stem Cell Research Enhancement Act of 2005, H. R. 810, 109th Cong. (2001). https://www.govtrack.us/congress/bills/109/hr810/text; Bush, G. W. (2006, July 19). Message to the House of Representatives. National Archives and Records Administration. https://georgewbush-whitehouse.archives.gov/news/releases/2006/07/20060719-5.html [10] National Archives and Records Administration. (2009, March 9). Executive order 13505 -- removing barriers to responsible scientific research involving human stem cells. National Archives and Records Administration. https://obamawhitehouse.archives.gov/the-press-office/removing-barriers-responsible-scientific-research-involving-human-stem-cells [11] Hurlbut, W. B. (2006). Science, Religion, and the Politics of Stem Cells. Social Research, 73(3), 819–834. http://www.jstor.org/stable/40971854 [12] Akpa-Inyang, Francis & Chima, Sylvester. (2021). South African traditional values and beliefs regarding informed consent and limitations of the principle of respect for autonomy in African communities: a cross-cultural qualitative study. BMC Medical Ethics. 22. 10.1186/s12910-021-00678-4. [13] Source for further reading: Tangwa G. B. (2007). Moral status of embryonic stem cells: perspective of an African villager. Bioethics, 21(8), 449–457. https://doi.org/10.1111/j.1467-8519.2007.00582.x , see also Mnisi, F. M. (2020). An African analysis based on ethics of Ubuntu - are human embryonic stem cell patents morally justifiable? African Insight, 49(4). [14] Jecker, N. S., & Atuire, C. (2021). Bioethics in Africa: A contextually enlightened analysis of three cases. Developing World Bioethics, 22(2), 112–122. https://doi.org/10.1111/dewb.12324 [15] Jecker, N. S., & Atuire, C. (2021). Bioethics in Africa: A contextually enlightened analysis of three cases. Developing World Bioethics, 22(2), 112–122. https://doi.org/10.1111/dewb.12324 [16] Jackson, C.S., Pepper, M.S. Opportunities and barriers to establishing a cell therapy programme in South Africa. Stem Cell Res Ther 4, 54 (2013). https://doi.org/10.1186/scrt204; Pew Research Center. (2014, May 1). Public health a major priority in African nations. Pew Research Center’s Global Attitudes Project. https://www.pewresearch.org/global/2014/05/01/public-health-a-major-priority-in-african-nations/ [17] Department of Health Republic of South Africa. (2021). Health Research Priorities (revised) for South Africa 2021-2024. National Health Research Strategy. https://www.health.gov.za/wp-content/uploads/2022/05/National-Health-Research-Priorities-2021-2024.pdf [18] Oosthuizen, H. (2013). Legal and Ethical Issues in Stem Cell Research in South Africa. In: Beran, R. (eds) Legal and Forensic Medicine. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-32338-6_80, see also: Gaobotse G (2018) Stem Cell Research in Africa: Legislation and Challenges. J Regen Med 7:1. doi: 10.4172/2325-9620.1000142 [19] United States Bureau of Citizenship and Immigration Services. (1998). Tunisia: Information on the status of Christian conversions in Tunisia. UNHCR Web Archive. https://webarchive.archive.unhcr.org/20230522142618/https://www.refworld.org/docid/3df0be9a2.html [20] Gaobotse, G. (2018) Stem Cell Research in Africa: Legislation and Challenges. J Regen Med 7:1. doi: 10.4172/2325-9620.1000142 [21] Kooli, C. Review of assisted reproduction techniques, laws, and regulations in Muslim countries. Middle East Fertil Soc J 24, 8 (2020). https://doi.org/10.1186/s43043-019-0011-0; Gaobotse, G. (2018) Stem Cell Research in Africa: Legislation and Challenges. J Regen Med 7:1. doi: 10.4172/2325-9620.1000142 [22] Pang M. C. (1999). Protective truthfulness: the Chinese way of safeguarding patients in informed treatment decisions. Journal of medical ethics, 25(3), 247–253. https://doi.org/10.1136/jme.25.3.247 [23] Wang, L., Wang, F., & Zhang, W. (2021). Bioethics in China’s biosecurity law: Forms, effects, and unsettled issues. Journal of law and the biosciences, 8(1). https://doi.org/10.1093/jlb/lsab019 https://academic.oup.com/jlb/article/8/1/lsab019/6299199 [24] Wang, Y., Xue, Y., & Guo, H. D. (2022). Intervention effects of traditional Chinese medicine on stem cell therapy of myocardial infarction. Frontiers in pharmacology, 13, 1013740. https://doi.org/10.3389/fphar.2022.1013740 [25] Li, X.-T., & Zhao, J. (2012). Chapter 4: An Approach to the Nature of Qi in TCM- Qi and Bioenergy. In Recent Advances in Theories and Practice of Chinese Medicine (p. 79). InTech. [26] Luo, D., Xu, Z., Wang, Z., & Ran, W. (2021). China's Stem Cell Research and Knowledge Levels of Medical Practitioners and Students. Stem cells international, 2021, 6667743. https://doi.org/10.1155/2021/6667743 [27] Luo, D., Xu, Z., Wang, Z., & Ran, W. (2021). China's Stem Cell Research and Knowledge Levels of Medical Practitioners and Students. Stem cells international, 2021, 6667743. https://doi.org/10.1155/2021/6667743 [28] Zhang, J. Y. (2017). Lost in translation? accountability and governance of Clinical Stem Cell Research in China. Regenerative Medicine, 12(6), 647–656. https://doi.org/10.2217/rme-2017-0035 [29] Wang, L., Wang, F., & Zhang, W. (2021). Bioethics in China’s biosecurity law: Forms, effects, and unsettled issues. Journal of law and the biosciences, 8(1). https://doi.org/10.1093/jlb/lsab019 https://academic.oup.com/jlb/article/8/1/lsab019/6299199 [30] Chen, H., Wei, T., Wang, H. et al. Association of China’s two-child policy with changes in number of births and birth defects rate, 2008–2017. BMC Public Health 22, 434 (2022). https://doi.org/10.1186/s12889-022-12839-0 [31] Azuma, K. Regulatory Landscape of Regenerative Medicine in Japan. Curr Stem Cell Rep 1, 118–128 (2015). https://doi.org/10.1007/s40778-015-0012-6 [32] Harris, R. (2005, May 19). Researchers Report Advance in Stem Cell Production. NPR. https://www.npr.org/2005/05/19/4658967/researchers-report-advance-in-stem-cell-production [33] Park, S. (2012). South Korea steps up stem-cell work. Nature. https://doi.org/10.1038/nature.2012.10565 [34] Resnik, D. B., Shamoo, A. E., & Krimsky, S. (2006). Fraudulent human embryonic stem cell research in South Korea: lessons learned. Accountability in research, 13(1), 101–109. https://doi.org/10.1080/08989620600634193. [35] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: interviews with researchers from Saudi Arabia. BMC medical ethics, 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6 [36]Association for the Advancement of Blood and Biotherapies. https://www.aabb.org/regulatory-and-advocacy/regulatory-affairs/regulatory-for-cellular-therapies/international-competent-authorities/saudi-arabia [37] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: Interviews with researchers from Saudi Arabia. BMC medical ethics, 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6 [38] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: Interviews with researchers from Saudi Arabia. BMC medical ethics, 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6 Culturally, autonomy practices follow a relational autonomy approach based on a paternalistic deontological health care model. The adherence to strict international research policies and religious pillars within the regulatory environment is a great foundation for research ethics. However, there is a need to develop locally targeted ethics approaches for research (as called for in Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: interviews with researchers from Saudi Arabia. BMC medical ethics, 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6), this decision-making approach may help advise a research decision model. For more on the clinical cultural autonomy approaches, see: Alabdullah, Y. Y., Alzaid, E., Alsaad, S., Alamri, T., Alolayan, S. W., Bah, S., & Aljoudi, A. S. (2022). Autonomy and paternalism in Shared decision‐making in a Saudi Arabian tertiary hospital: A cross‐sectional study. Developing World Bioethics, 23(3), 260–268. https://doi.org/10.1111/dewb.12355; Bukhari, A. A. (2017). Universal Principles of Bioethics and Patient Rights in Saudi Arabia (Doctoral dissertation, Duquesne University). https://dsc.duq.edu/etd/124; Ladha, S., Nakshawani, S. A., Alzaidy, A., & Tarab, B. (2023, October 26). Islam and Bioethics: What We All Need to Know. Columbia University School of Professional Studies. https://sps.columbia.edu/events/islam-and-bioethics-what-we-all-need-know [39] Ababneh, M. A., Al-Azzam, S. I., Alzoubi, K., Rababa’h, A., & Al Demour, S. (2021). Understanding and attitudes of the Jordanian public about clinical research ethics. Research Ethics, 17(2), 228-241. https://doi.org/10.1177/1747016120966779 [40] Ababneh, M. A., Al-Azzam, S. I., Alzoubi, K., Rababa’h, A., & Al Demour, S. (2021). Understanding and attitudes of the Jordanian public about clinical research ethics. Research Ethics, 17(2), 228-241. https://doi.org/10.1177/1747016120966779 [41] Dajani, R. (2014). Jordan’s stem-cell law can guide the Middle East. Nature 510, 189. https://doi.org/10.1038/510189a [42] Dajani, R. (2014). Jordan’s stem-cell law can guide the Middle East. Nature 510, 189. https://doi.org/10.1038/510189a [43] The EU’s definition of autonomy relates to the capacity for creating ideas, moral insight, decisions, and actions without constraint, personal responsibility, and informed consent. However, the EU views autonomy as not completely able to protect individuals and depends on other principles, such as dignity, which “expresses the intrinsic worth and fundamental equality of all human beings.” Rendtorff, J.D., Kemp, P. (2019). Four Ethical Principles in European Bioethics and Biolaw: Autonomy, Dignity, Integrity and Vulnerability. In: Valdés, E., Lecaros, J. (eds) Biolaw and Policy in the Twenty-First Century. International Library of Ethics, Law, and the New Medicine, vol 78. Springer, Cham. https://doi.org/10.1007/978-3-030-05903-3_3 [44] Council of Europe. Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (ETS No. 164) https://www.coe.int/en/web/conventions/full-list?module=treaty-detail&treatynum=164 (forbidding the creation of embryos for research purposes only, and suggests embryos in vitro have protections.); Also see Drabiak-Syed B. K. (2013). New President, New Human Embryonic Stem Cell Research Policy: Comparative International Perspectives and Embryonic Stem Cell Research Laws in France. Biotechnology Law Report, 32(6), 349–356. https://doi.org/10.1089/blr.2013.9865 [45] Rendtorff, J.D., Kemp, P. (2019). Four Ethical Principles in European Bioethics and Biolaw: Autonomy, Dignity, Integrity and Vulnerability. In: Valdés, E., Lecaros, J. (eds) Biolaw and Policy in the Twenty-First Century. International Library of Ethics, Law, and the New Medicine, vol 78. Springer, Cham. https://doi.org/10.1007/978-3-030-05903-3_3 [46] Tomuschat, C., Currie, D. P., Kommers, D. P., & Kerr, R. (Trans.). (1949, May 23). Basic law for the Federal Republic of Germany. https://www.btg-bestellservice.de/pdf/80201000.pdf [47] Regulation of Stem Cell Research in Germany. Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-germany [48] Regulation of Stem Cell Research in Finland. Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-finland [49] Regulation of Stem Cell Research in Spain. Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-spain [50] Some sources to consider regarding ethics models or regulatory oversights of other cultures not covered: Kara MA. Applicability of the principle of respect for autonomy: the perspective of Turkey. J Med Ethics. 2007 Nov;33(11):627-30. doi: 10.1136/jme.2006.017400. PMID: 17971462; PMCID: PMC2598110. Ugarte, O. N., & Acioly, M. A. (2014). The principle of autonomy in Brazil: one needs to discuss it ... Revista do Colegio Brasileiro de Cirurgioes, 41(5), 374–377. https://doi.org/10.1590/0100-69912014005013 Bharadwaj, A., & Glasner, P. E. (2012). Local cells, global science: The rise of embryonic stem cell research in India. Routledge. For further research on specific European countries regarding ethical and regulatory framework, we recommend this database: Regulation of Stem Cell Research in Europe. Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-europe [51] Klitzman, R. (2006). Complications of culture in obtaining informed consent. The American Journal of Bioethics, 6(1), 20–21. https://doi.org/10.1080/15265160500394671 see also: Ekmekci, P. E., & Arda, B. (2017). Interculturalism and Informed Consent: Respecting Cultural Differences without Breaching Human Rights. Cultura (Iasi, Romania), 14(2), 159–172.; For why trust is important in research, see also: Gray, B., Hilder, J., Macdonald, L., Tester, R., Dowell, A., & Stubbe, M. (2017). Are research ethics guidelines culturally competent? Research Ethics, 13(1), 23-41. https://doi.org/10.1177/1747016116650235 [52] The Qur'an (M. Khattab, Trans.). (1965). Al-Mu’minun, 23: 12-14. https://quran.com/23 [53] Lenfest, Y. (2017, December 8). Islam and the beginning of human life. Bill of Health. https://blog.petrieflom.law.harvard.edu/2017/12/08/islam-and-the-beginning-of-human-life/ [54] Aksoy, S. (2005). Making regulations and drawing up legislation in Islamic countries under conditions of uncertainty, with special reference to embryonic stem cell research. Journal of Medical Ethics, 31:399-403.; see also: Mahmoud, Azza. "Islamic Bioethics: National Regulations and Guidelines of Human Stem Cell Research in the Muslim World." Master's thesis, Chapman University, 2022. https://doi.org/10.36837/ chapman.000386 [55] Rashid, R. (2022). When does Ensoulment occur in the Human Foetus. Journal of the British Islamic Medical Association, 12(4). ISSN 2634 8071. https://www.jbima.com/wp-content/uploads/2023/01/2-Ethics-3_-Ensoulment_Rafaqat.pdf. [56] Sivaraman, M. & Noor, S. (2017). Ethics of embryonic stem cell research according to Buddhist, Hindu, Catholic, and Islamic religions: perspective from Malaysia. Asian Biomedicine,8(1) 43-52. https://doi.org/10.5372/1905-7415.0801.260 [57] Jafari, M., Elahi, F., Ozyurt, S. & Wrigley, T. (2007). 4. Religious Perspectives on Embryonic Stem Cell Research. In K. Monroe, R. Miller & J. Tobis (Ed.), Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues (pp. 79-94). Berkeley: University of California Press. https://escholarship.org/content/qt9rj0k7s3/qt9rj0k7s3_noSplash_f9aca2e02c3777c7fb76ea768ba458f0.pdf https://doi.org/10.1525/9780520940994-005 [58] Lecso, P. A. (1991). The Bodhisattva Ideal and Organ Transplantation. Journal of Religion and Health, 30(1), 35–41. http://www.jstor.org/stable/27510629; Bodhisattva, S. (n.d.). The Key of Becoming a Bodhisattva. A Guide to the Bodhisattva Way of Life. http://www.buddhism.org/Sutras/2/BodhisattvaWay.htm [59] There is no explicit religious reference to when life begins or how to conduct research that interacts with the concept of life. However, these are relevant verses pertaining to how the fetus is viewed. ((King James Bible. (1999). Oxford University Press. (original work published 1769)) Jerimiah 1: 5 “Before I formed thee in the belly I knew thee; and before thou camest forth out of the womb I sanctified thee…” In prophet Jerimiah’s insight, God set him apart as a person known before childbirth, a theme carried within the Psalm of David. Psalm 139: 13-14 “…Thou hast covered me in my mother's womb. I will praise thee; for I am fearfully and wonderfully made…” These verses demonstrate David’s respect for God as an entity that would know of all man’s thoughts and doings even before birth. [60] It should be noted that abortion is not supported as well. [61] The Vatican. (1987, February 22). Instruction on Respect for Human Life in Its Origin and on the Dignity of Procreation Replies to Certain Questions of the Day. Congregation For the Doctrine of the Faith. https://www.vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_19870222_respect-for-human-life_en.html [62] The Vatican. (2000, August 25). Declaration On the Production and the Scientific and Therapeutic Use of Human Embryonic Stem Cells. Pontifical Academy for Life. https://www.vatican.va/roman_curia/pontifical_academies/acdlife/documents/rc_pa_acdlife_doc_20000824_cellule-staminali_en.html; Ohara, N. (2003). Ethical Consideration of Experimentation Using Living Human Embryos: The Catholic Church’s Position on Human Embryonic Stem Cell Research and Human Cloning. Department of Obstetrics and Gynecology. Retrieved from https://article.imrpress.com/journal/CEOG/30/2-3/pii/2003018/77-81.pdf. [63] Smith, G. A. (2022, May 23). Like Americans overall, Catholics vary in their abortion views, with regular mass attenders most opposed. Pew Research Center. https://www.pewresearch.org/short-reads/2022/05/23/like-americans-overall-catholics-vary-in-their-abortion-views-with-regular-mass-attenders-most-opposed/ [64] Rosner, F., & Reichman, E. (2002). Embryonic stem cell research in Jewish law. Journal of halacha and contemporary society, (43), 49–68.; Jafari, M., Elahi, F., Ozyurt, S. & Wrigley, T. (2007). 4. Religious Perspectives on Embryonic Stem Cell Research. In K. Monroe, R. Miller & J. Tobis (Ed.), Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues (pp. 79-94). Berkeley: University of California Press. https://escholarship.org/content/qt9rj0k7s3/qt9rj0k7s3_noSplash_f9aca2e02c3777c7fb76ea768ba458f0.pdf https://doi.org/10.1525/9780520940994-005 [65] Schenker J. G. (2008). The beginning of human life: status of embryo. Perspectives in Halakha (Jewish Religious Law). Journal of assisted reproduction and genetics, 25(6), 271–276. https://doi.org/10.1007/s10815-008-9221-6 [66] Ruttenberg, D. (2020, May 5). The Torah of Abortion Justice (annotated source sheet). Sefaria. https://www.sefaria.org/sheets/234926.7?lang=bi&with=all&lang2=en [67] Jafari, M., Elahi, F., Ozyurt, S. & Wrigley, T. (2007). 4. Religious Perspectives on Embryonic Stem Cell Research. In K. Monroe, R. Miller & J. Tobis (Ed.), Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues (pp. 79-94). Berkeley: University of California Press. https://escholarship.org/content/qt9rj0k7s3/qt9rj0k7s3_noSplash_f9aca2e02c3777c7fb76ea768ba458f0.pdf https://doi.org/10.1525/9780520940994-005 [68] Gert, B. (2007). Common morality: Deciding what to do. Oxford Univ. Press. [69] World Medical Association (2013). World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA, 310(20), 2191–2194. https://doi.org/10.1001/jama.2013.281053 Declaration of Helsinki – WMA – The World Medical Association.; see also: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1979). The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. U.S. Department of Health and Human Services. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html [70] Zakarin Safier, L., Gumer, A., Kline, M., Egli, D., & Sauer, M. V. (2018). Compensating human subjects providing oocytes for stem cell research: 9-year experience and outcomes. Journal of assisted reproduction and genetics, 35(7), 1219–1225. https://doi.org/10.1007/s10815-018-1171-z https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6063839/ see also: Riordan, N. H., & Paz Rodríguez, J. (2021). Addressing concerns regarding associated costs, transparency, and integrity of research in recent stem cell trial. Stem Cells Translational Medicine, 10(12), 1715–1716. https://doi.org/10.1002/sctm.21-0234 [71] Klitzman, R., & Sauer, M. V. (2009). Payment of egg donors in stem cell research in the USA. Reproductive biomedicine online, 18(5), 603–608. https://doi.org/10.1016/s1472-6483(10)60002-8 [72] Krosin, M. T., Klitzman, R., Levin, B., Cheng, J., & Ranney, M. L. (2006). Problems in comprehension of informed consent in rural and peri-urban Mali, West Africa. Clinical trials (London, England), 3(3), 306–313. https://doi.org/10.1191/1740774506cn150oa [73] Veatch, Robert M. Hippocratic, Religious, and Secular Medical Ethics: The Points of Conflict. Georgetown University Press, 2012. [74] Msoroka, M. S., & Amundsen, D. (2018). One size fits not quite all: Universal research ethics with diversity. Research Ethics, 14(3), 1-17. https://doi.org/10.1177/1747016117739939 [75] Pirzada, N. (2022). The Expansion of Turkey’s Medical Tourism Industry. Voices in Bioethics, 8. https://doi.org/10.52214/vib.v8i.9894 [76] Stem Cell Tourism: False Hope for Real Money. Harvard Stem Cell Institute (HSCI). (2023). https://hsci.harvard.edu/stem-cell-tourism, See also: Bissassar, M. (2017). Transnational Stem Cell Tourism: An ethical analysis. Voices in Bioethics, 3. https://doi.org/10.7916/vib.v3i.6027 [77]Song, P. (2011) The proliferation of stem cell therapies in post-Mao China: problematizing ethical regulation, New Genetics and Society, 30:2, 141-153, DOI: 10.1080/14636778.2011.574375 [78] Dajani, R. (2014). Jordan’s stem-cell law can guide the Middle East. Nature 510, 189. https://doi.org/10.1038/510189a [79] International Society for Stem Cell Research. (2024). Standards in stem cell research. International Society for Stem Cell Research. https://www.isscr.org/guidelines/5-standards-in-stem-cell-research [80] Benjamin, R. (2013). People’s science bodies and rights on the Stem Cell Frontier. Stanford University Press.

“Human beings are not born once and for all on the day their mothers give birth to them [...] life obliges them over and over again to give birth to themselves.” (Garcia Marquez 165) Introduction The refugee experience is, at heart, one of rebirth. Just as becoming a new, distinctive being—biological birth—necessarily involves the physical separation of mother and infant, so becoming a refugee entails separation from a "mother country." This mother country may or may not be a recognised nation state; the point is that the refugee transitions from physical connectedness to separation, from insider to outsider, from endemic to alien. Like babies, refugees may have little control over the timing and conditions of their expulsion. Successful resettlement requires not one rebirth but multiple rebirths—resettlement is a lifelong process (Layton)—which in turn require hope, imagination, and energy. In rebirthing themselves over and over again, people who have fled or been forced from their homelands become both mother and child. They do not go through this rebirthing alone. A range of agencies and individuals may be there to assist, including immigration officials, settlement services, schools and teachers, employment agencies and employers, English as a Second Language (ESL) resources and instructors, health-care providers, counsellors, diasporic networks, neighbours, church groups, and other community organisations. The nature, intensity, and duration of these “midwives’” interventions—and when they occur and in what combinations—vary hugely from place to place and from person to person, but there is clear evidence that post-migration experiences have a significant impact on settlement outcomes (Fozdar and Hartley). This paper draws on qualitative research I did in 2012 in a regional town in New South Wales to illuminate some of the ways in which settlement aides ease, or impede, refugees’ rebirth as fully recognised and participating Australians. I begin by considering what it means to be resilient before tracing some of the dimensions of the resettlement process. In doing so, I draw on data from interviews and focus groups with former refugees, service providers, and other residents of the town I shall call Easthaven. First, though, a word about Easthaven. As is the case in many rural and regional parts of Australia, Easthaven’s population is strongly dominated by Anglo Celtic and Saxon ancestries: 2011 Census data show that more than 80 per cent of residents were born in Australia (compared with a national figure of 69.8 per cent) and about 90 per cent speak only English at home (76.8 per cent). Almost twice as many people identify as Aboriginal or Torres Strait Islander as the national figure of 2.5 per cent (Australian Bureau of Statistics). For several years Easthaven has been an official “Refugee Welcome Zone”, welcoming hundreds of refugees from diverse countries in Africa and the Middle East as well as from Myanmar. This reflects the Department of Immigration and Citizenship’s drive to settle a fifth of Australia’s 13,750 humanitarian entrants a year directly in regional areas. In Easthaven’s schools—which is where I focused my research—almost all of the ESL students are from refugee backgrounds. Defining Resilience Much of the research on human resilience is grounded in psychology, with a capacity to “bounce back” from adverse experiences cited in many definitions of resilience (e.g. American Psychological Association). Bouncing back implies a relatively quick process, and a return to a state or form similar to that which existed before the encounter with adversity. Yet resilience often requires sustained effort and significant changes in identity. As Jerome Rugaruza, a former UNHCR refugee, says of his journey from the Democratic Republic of Congo to Australia: All the steps begin in the burning village: you run with nothing to eat, no clothes. You just go. Then you get to the refugee camp […] You have a little bread and you thank god you are safe. Then after a few years in the camp, you think about a future for your children. You arrive in Australia and then you learn a new language, you learn to drive. There are so many steps and not everyone can do it. (Milsom) Not everyone can do it, but a large majority do. Research by Graeme Hugo, for example, shows that although humanitarian settlers in Australia face substantial barriers to employment and initially have much higher unemployment rates than other immigrants, for most nationality groups this difference has disappeared by the second generation: “This is consistent with the sacrifice (or investment) of the first generation and the efforts extended to attain higher levels of education and English proficiency, thereby reducing the barriers over time.” (Hugo 35). Ingrid Poulson writes that “resilience is not just about bouncing. Bouncing […] is only a reaction. Resilience is about rising—you rise above it, you rise to the occasion, you rise to the challenge. Rising is an active choice” (47; my emphasis) I see resilience as involving mental and physical grit, coupled with creativity, aspiration and, crucially, agency. Dimensions of Resettlement To return to the story of 41-year-old Jerome Rugaruza, as related in a recent newspaper article: He [Mr Rugaruza] describes the experience of being a newly arrived refugee as being like that of a newborn baby. “You need special care; you have to learn to speak [English], eat the different food, create relationships, connections”. (Milsom) This is a key dimension of resettlement: the adult becomes like an infant again, shifting from someone who knows how things work and how to get by to someone who is likely to be, for a while, dependent on others for even the most basic things—communication, food, shelter, clothing, and social contact. The “special care” that most refugee arrivals need initially (and sometimes for a long time) often results in their being seen as deficient—in knowledge, skills, dispositions, and capacities as well as material goods (Keddie; Uptin, Wright and Harwood). As Fozdar and Hartley note: “The tendency to use a deficit model in refugee resettlement devalues people and reinforces the view of the mainstream population that refugees are a liability” (27). Yet unlike newborns, humanitarian settlers come to their new countries with rich social networks and extensive histories of experience and learning—resources that are in fact vital to their rebirth. Sisay (all names are pseudonyms), a year 11 student of Ethiopian heritage who was born in Kenya, told me with feeling: I had a life back in Africa [her emphasis]. It was good. Well, I would go back there if there’s no problems, which—is a fact. And I came here for a better life—yeah, I have a better life, there’s good health care, free school, and good environment and all that. But what’s that without friends? A fellow student, Celine, who came to Australia five years ago from Burundi via Uganda, told me in a focus group: Some teachers are really good but I think some other teachers could be a little bit more encouraging and understanding of what we’ve gone through, because [they] just look at you like “You’re year 11 now, you should know this” […] It’s really discouraging when [the teachers say] in front of the class, “Oh, you shouldn’t do this subject because you haven’t done this this this this” […] It’s like they’re on purpose to tell you “you don’t have what it takes; just give up and do something else.” As Uptin, Wright and Harwood note, “schools not only have the power to position who is included in schooling (in culture and pedagogy) but also have the power to determine whether there is room and appreciation for diversity” (126). Both Sisay and Celine were disheartened by the fact they felt some of their teachers, and many of their peers, had little interest in or understanding of their lives before they came to Australia. The teachers’ low expectations of refugee-background students (Keddie, Uptin, Wright and Harwood) contrasted with the students’ and their families’ high expectations of themselves (Brown, Miller and Mitchell; Harris and Marlowe). When I asked Sisay about her post-school ambitions, she said: “I have a good idea of my future […] write a documentary. And I’m working on it.” Celine’s response was: “I know I’m gonna do medicine, be a doctor.” A third girl, Lily, who came to Australia from Myanmar three years ago, told me she wanted to be an accountant and had studied accounting at the local TAFE last year. Joseph, a father of three who resettled from South Sudan seven years ago, stressed how important getting a job was to successful settlement: [But] you have to get a certificate first to get a job. Even the job of cleaning—when I came here I was told that somebody has to go to have training in cleaning, to use the different chemicals to clean the ground and all that. But that is just sweeping and cleaning with water—you don’t need the [higher-level] skills. Simple jobs like this, we are not able to get them. In regional Australia, employment opportunities tend to be limited (Fozdar and Hartley); the unemployment rate in Easthaven is twice the national average. Opportunities to study are also more limited than in urban centres, and would-be students are not always eligible for financial assistance to gain or upgrade qualifications. Even when people do have appropriate qualifications, work experience, and language proficiency, the colour of their skin may still mean they miss out on a job. Tilbury and Colic-Peisker have documented the various ways in which employers deflect responsibility for racial discrimination, including the “common” strategy (658) of arguing that while the employer or organisation is not prejudiced, they have to discriminate because of their clients’ needs or expectations. I heard this strategy deployed in an interview with a local businesswoman, Catriona: We were advertising for a new technician. And one of the African refugees came to us and he’d had a lot of IT experience. And this is awful, but we felt we couldn't give him the job, because we send our technicians into people's houses, and we knew that if a black African guy rocked up at someone’s house to try and fix their computer, they would not always be welcomed in all—look, it would not be something that [Easthaven] was ready for yet. Colic-Peisker and Tilbury (Refugees and Employment) note that while Australia has strict anti-discrimination legislation, this legislation may be of little use to the people who, because of the way they look and sound (skin colour, dress, accent), are most likely to face prejudice and discrimination. The researchers found that perceived discrimination in the labour market affected humanitarian settlers’ sense of satisfaction with their new lives far more than, for example, racist remarks, which were generally shrugged off; the students I interviewed spoke of racism as “expected,” but “quite rare.” Most of the people Colic-Peisker and Tilbury surveyed reported finding Australians “friendly and accepting” (33). Even if there is no active discrimination on the basis of skin colour in employment, education, or housing, or overt racism in social situations, visible difference can still affect a person’s sense of belonging, as Joseph recounts: I think of myself as Australian, but my colour doesn’t [laughs] […] Unfortunately many, many Australians are expecting that Australia is a country of Europeans … There is no need for somebody to ask “Where do you come from?” and “Do you find Australia here safe?” and “Do you enjoy it?” Those kind of questions doesn’t encourage that we are together. This highlights another dimension of resettlement: the journey from feeling “at home” to feeling “foreign” to, eventually, feeling at home again in the host country (Colic-Peisker and Tilbury, Refugees and Employment). In the case of visibly different settlers, however, this last stage may never be completed. Whether the questions asked of Joseph are well intentioned or not, their effect may be the same: they position him as a “forever foreigner” (Park). A further dimension of resettlement—one already touched on—is the degree to which humanitarian settlers actively manage their “rebirth,” and are allowed and encouraged to do so. A key factor will be their mastery of English, and Easthaven’s ESL teachers are thus pivotal in the resettlement process. There is little doubt that many of these teachers have gone to great lengths to help this cohort of students, not only in terms of language acquisition but also social inclusion. However, in some cases what is initially supportive can, with time, begin to undermine refugees’ maturity into independent citizens. Sharon, an ESL teacher at one of the schools, told me how she and her colleagues would give their refugee-background students lifts to social events: But then maybe three years down the track they have a car and their dad can drive, but they still won’t take them […] We arrive to pick them up and they’re not ready, or there’s five fantastic cars in the driveway, and you pick up the student and they say “My dad’s car’s much bigger and better than yours” [laughs]. So there’s an expectation that we’ll do stuff for them, but we’ve created that [my emphasis]. Other support services may have more complex interests in keeping refugee settlers dependent. The more clients an agency has, the more services it provides, and the longer clients stay on its books, the more lucrative the contract for the agency. Thus financial and employment imperatives promote competition rather than collaboration between service providers (Fozdar and Hartley; Sidhu and Taylor) and may encourage assumptions about what sorts of services different individuals and groups want and need. Colic-Peisker and Tilbury (“‘Active’ and ‘Passive’ Resettlement”) have developed a typology of resettlement styles—“achievers,” “consumers,” “endurers,” and “victims”—but stress that a person’s style, while influenced by personality and pre-migration factors, is also shaped by the institutions and individuals they come into contact with: “The structure of settlement and welfare services may produce a victim mentality, leaving members of refugee communities inert and unable to see themselves as agents of change” (76). The prevailing narrative of “the traumatised refugee” is a key aspect of this dynamic (Colic-Peisker and Tilbury, “‘Active’ and ‘Passive’ Resettlement”; Fozdar and Hartley; Keddie). Service providers may make assumptions about what humanitarian settlers have gone through before arriving in Australia, how they have been affected by their experiences, and what must be done to “fix” them. Norah, a long-time caseworker, told me: I think you get some [providers] who go, “How could you have gone through something like that and not suffered? There must be—you must have to talk about this stuff” […] Where some [refugees] just come with the [attitude] “We’re all born into a situation; that was my situation, but I’m here now and now my focus is this.” She cited failure to consider cultural sensitivities around mental illness and to recognise that stress and anxiety during early resettlement are normal (Tilbury) as other problems in the sector: [Newly arrived refugees] go through the “happy to be here” [phase] and now “hang on, I’ve thumped to the bottom and I’m missing my own foods and smells and cultures and experiences”. I think sometimes we’re just too quick to try and slot people into a box. One factor that appears to be vital in fostering and sustaining resilience is social connection. Norah said her clients were “very good on the mobile phone” and had links “everywhere,” including to family and friends in their countries of birth, transition countries, and other parts of Australia. A 2011 report for DIAC, Settlement Outcomes of New Arrivals, found that humanitarian entrants to Australia were significantly more likely to be members of cultural and/or religious groups than other categories of immigrants (Australian Survey Research). I found many examples of efforts to build both bonding and bridging capital (Putnam) in Easthaven, and I offer two examples below. Several people told me about a dinner-dance that had been held a few weeks before one of my visits. The event was organised by an African women’s group, which had been formed—with funding assistance—several years before. The dinner-dance was advertised in the local newspaper and attracted strong interest from a broad cross-section of Easthaveners. To Debbie, a counsellor, the response signified a “real turnaround” in community relations and was a big boon to the women’s sense of belonging. Erica, a teacher, told me about a cultural exchange day she had organised between her bush school—where almost all of the children are Anglo Australian—and ESL students from one of the town schools: At the start of the day, my kids were looking at [the refugee-background students] and they were scared, they were saying to me, "I feel scared." And we shoved them all into this tiny little room […] and they had no choice but to sit practically on top of each other. And by the end of the day, they were hugging each other and braiding their hair and jumping and playing together. Like Uptin, Wright and Harwood, I found that the refugee-background students placed great importance on the social aspects of school. Sisay, the girl I introduced earlier in this paper, said: “It’s just all about friendship and someone to be there for you […] We try to be friends with them [the non-refugee students] sometimes but sometimes it just seems they don’t want it.” Conclusion A 2012 report on refugee settlement services in NSW concludes that the state “is not meeting its responsibility to humanitarian entrants as well as it could” (Audit Office of New South Wales 2); moreover, humanitarian settlers in NSW are doing less well on indicators such as housing and health than humanitarian settlers in other states (3). Evaluating the effectiveness of formal refugee-centred programs was not part of my research and is beyond the scope of this paper. Rather, I have sought to reveal some of the ways in which the attitudes, assumptions, and everyday practices of service providers and members of the broader community impact on refugees' settlement experience. What I heard repeatedly in the interviews I conducted was that it was emotional and practical support (Matthews; Tilbury), and being asked as well as told (about their hopes, needs, desires), that helped Easthaven’s refugee settlers bear themselves into fulfilling new lives. References Audit Office of New South Wales. Settling Humanitarian Entrants in New South Wales—Executive Summary. May 2012. 15 Aug. 2013 ‹http://www.audit.nsw.gov.au/ArticleDocuments/245/02_Humanitarian_Entrants_2012_Executive_Summary.pdf.aspx?Embed=Y>. Australian Bureau of Statistics. 2011 Census QuickStats. Mar. 2013. 11 Aug. 2013 ‹http://www.censusdata.abs.gov.au/census_services/getproduct/census/2011/quickstat/0>. Australian Survey Research. Settlement Outcomes of New Arrivals—Report of Findings. Apr. 2011. 15 Aug. 2013 ‹http://www.immi.gov.au/media/publications/research/_pdf/settlement-outcomes-new-arrivals.pdf>. Brown, Jill, Jenny Miller, and Jane Mitchell. “Interrupted Schooling and the Acquisition of Literacy: Experiences of Sudanese Refugees in Victorian Secondary Schools.” Australian Journal of Language and Literacy 29.2 (2006): 150-62. Colic-Peisker, Val, and Farida Tilbury. “‘Active’ and ‘Passive’ Resettlement: The Influence of Supporting Services and Refugees’ Own Resources on Resettlement Style.” International Migration 41.5 (2004): 61-91. ———. Refugees and Employment: The Effect of Visible Difference on Discrimination—Final Report. Perth: Centre for Social and Community Research, Murdoch University, 2007. Fozdar, Farida, and Lisa Hartley. “Refugee Resettlement in Australia: What We Know and Need To Know.” Refugee Survey Quarterly 4 Jun. 2013. 12 Aug. 2013 ‹http://rsq.oxfordjournals.org/search?fulltext=fozdar&submit=yes&x=0&y=0>. Garcia Marquez, Gabriel. Love in the Time of Cholera. London: Penguin Books, 1989. Harris, Vandra, and Jay Marlowe. “Hard Yards and High Hopes: The Educational Challenges of African Refugee University Students in Australia.” International Journal of Teaching and Learning in Higher Education 23.2 (2011): 186-96. Hugo, Graeme. A Significant Contribution: The Economic, Social and Civic Contributions of First and Second Generation Humanitarian Entrants—Summary of Findings. Canberra: Department of Immigration and Citizenship, 2011. Keddie, Amanda. “Pursuing Justice for Refugee Students: Addressing Issues of Cultural (Mis)recognition.” International Journal of Inclusive Education 16.12 (2012): 1295-1310. Layton, Robyn. "Building Capacity to Ensure the Inclusion of Vulnerable Groups." Creating Our Future conference, Adelaide, 28 Jul. 2012. Milsom, Rosemarie. “From Hard Luck Life to the Lucky Country.” Sydney Morning Herald 20 Jun. 2013. 12 Aug. 2013 ‹http://www.smh.com.au/national/from-hard-luck-life-to-the-lucky-country-20130619-2oixl.html>. Park, Gilbert C. “’Are We Real Americans?’: Cultural Production of Forever Foreigners at a Diversity Event.” Education and Urban Society 43.4 (2011): 451-67. Poulson, Ingrid. Rise. Sydney: Pan Macmillan Australia, 2008. Putnam, Robert D. Bowling Alone: The Collapse and Revival of American Community. New York: Simon & Schuster, 2000. Sidhu, Ravinder K., and Sandra Taylor. “The Trials and Tribulations of Partnerships in Refugee Settlement Services in Australia.” Journal of Education Policy 24.6 (2009): 655-72. Tilbury, Farida. “‘I Feel I Am a Bird without Wings’: Discourses of Sadness and Loss among East Africans in Western Australia.” Identities: Global Studies in Culture and Power 14.4 (2007): 433-58. ———, and Val Colic-Peisker. “Deflecting Responsibility in Employer Talk about Race Discrimination.” Discourse & Society 17.5 (2006): 651-76. Uptin, Jonnell, Jan Wright, and Valerie Harwood. “It Felt Like I Was a Black Dot on White Paper: Examining Young Former Refugees’ Experience of Entering Australian High Schools.” The Australian Educational Researcher 40.1 (2013): 125-37.