از نوع دوستی تا کسب درآمد: ایده های زنان استرالیا در مورد پول، اخلاق و تخم مرغ پژوهشی
|کد مقاله||سال انتشار||تعداد صفحات مقاله انگلیسی||ترجمه فارسی|
|33043||2013||9 صفحه PDF||سفارش دهید|
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Publisher : Elsevier - Science Direct (الزویر - ساینس دایرکت)
Journal : Social Science & Medicine, Volume 94, October 2013, Pages 34–42
We report the results of a qualitative study carried out in metropolitan Australia between 2009 and 2011 that canvassed the issue of payment for research oöcyte donation with participants drawn from three potential donor groups; fertility patients, reproductive donors and young, non-patient women. Research oöcytes are controversial tissues because women around the world have proved largely unwilling to donate them altruistically. In the ensuing international debate about procurement, the issue of money and its appropriate and inappropriate uses in tissue donation has taken centre stage. While there is now an abundance of expert commentary on this matter, there are almost no studies that probe this issue with potential donor populations. Our study asked the three groups of women about their understandings of altruistic, reimbursed, subsidised, compensated and paid donation for both reproductive and research eggs. We identify a resistance to the introduction of money into the sphere of reproductive donation, which the majority of respondents felt should remain an area of personalised gift relations. In the area of research donation we find a strong relationship between degrees of liquidity (the extent to which money is constrained or unconstrained) and a sense of ethical appropriateness. We also describe a culturally specific sense of fairness and equity among participants, associated with the relatively high public subsidisation of fertility treatment in Australia, which they used to benchmark their sense of appropriate and inappropriate uses of money. While the participant responses reflect the regulatory environment in Australia, particularly the absence of a US style market in reproductive oöcytes, they also make an important contribution to the global debate.
Since the mid-twentieth century in the advanced industrial nations, two methods have been used to procure human tissues for research. The first is altruistic donation through formal consent. The second is the harvesting of so-called ‘abandoned’ or ‘waste’ tissue, left behind in the clinic after surgical procedures, diagnostic tests or biopsy, in which the patient is assumed to lack interest. While regulatory reform and increasing concern over patient's rights have made the category of abandoned tissue more residual, for the most part the principle of altruistic donation for public benefit remains intact, despite assorted controversies over the patenting or commercialisation of human tissues after donation ( Waldby & Mitchell, 2006). In this paper we will examine a kind of research tissue that has proved inaccessible to these two procurement systems: human oöcytes. Since the development of mammalian cloning and human embryonic stem cell lines in the late 1990s, human oöcytes have become objects of intense scientific interest. Oöcytes are essential elements in a type of stem cell research termed somatic cell nuclear transfer (SCNT), which, in theory at least, could be used to produce patient specific tissues suitable for transplant. In SCNT, a nucleus from a patient's body cell, such as a skin cell, is introduced into an unfertilized oöcyte from which the original genetic material has been removed. The oöcyte is then used to produce a blastocyst (an early embryo) whose stem cells could be used to create tissue that would be compatible with that of the patient. Human SCNT research remains highly experimental. The first human embryos were generated through somatic cell nuclear transfer in 2013 (Tachibana, Amato, et al., 2013) and considerable research will be required before clinical applications are feasible. This research requires large numbers of fresh, unfertilised oöcytes, as techniques are developed and refined. However, clinics that have attempted to secure strictly altruistic donation report either complete failure or very small numbers (Baylis & McLeod, 2007). The reasons for this are complex, but the succinct explanation is that oöcytes do not readily constitute a surplus tissue for women. Historically the system of altruistic donation, such as blood donation, depends on the donor being able to readily part with the material, in both a biological and a social sense. They are both healthy enough to do without the tissue, and the method of donation itself is tolerably simple and without significant risk. In practice the determination of what counts as a surplus is often very involved, and intimately tied into broader social systems of equity and inequity ( Waldby & Mitchell, 2006). Surpluses can be elicited as an effect of power relationships, particularly those associated with poverty. Hence we see the phenomenon of live kidney vending, where the precarity of the seller forces them into exchange for money, to the detriment of their health ( Cohen, 2001). Even in more equitable circumstances, the determination of a tissue surplus is not necessarily transparent. For example, recent research into the ways couples in fertility treatment designated their embryos as available for research donation, found that it depended on a multitude of factors including; the clinic freezing policies, its facilities for blastocyst culturing, grading procedures, and the woman's age and risk for pregnancy complications (Scott, Williams, et al., 2012). Nevertheless, this formulation has largely been successful in securing altruistic donations of embryos to stem cell research (Parry, 2006). However, the biological and social qualities of oöcytes do not readily lend themselves to altruistic donation. Both IVF embryos and oöcytes are onerous to produce, involving several weeks of hormonal treatment, clinic visits and surgical collection. Nevertheless, oöcytes occupy a more critical position in the IVF trajectory. Their numbers and degree of fertility set the initial conditions for any chance at subsequent success in the creation of a child, and fertility patients express a strong preference to retain and fertilise them all, rather than divert them to research. Moreover, while a proportion of embryos are routinely frozen during a treatment cycle, and can be donated after treatment is completed, oöcytes are used fresh and all at once. Hence, they do not lend themselves readily to deliberation, because they are not preserved over time ( Waldby & Carroll, 2012). A small number of empirical studies investigate altruistic oöcyte donation, mostly for reproductive proposes, and they confirm both a low willingness to donate and something of a preference for reproductive over research donation. So, Byrd and colleagues surveyed 113 reproductive egg donors in the UK, and found that their overwhelming motivation to donate was a desire to help childless couples, with littler interest in research donation (Byrd, Sidebotham, et al., 2002). Murray and Golombok in their UK study found that three-quarters of potential reproductive oöcyte donors in IVF clinics changed their mind about donating after receiving information about the procedures (Murray & Golombok, 2000). An Australian survey of 2269 IVF patients found that only two percent had donated oöcytes for research. The most common reason for not donating (48%) was a reduction in the number of eggs available for the respondents themselves to conceive (Access Australia, 2008). So we can see that women already in fertility treatment have proved unwilling to designate oöcytes as surplus tissues and divert them from their own reproductive path. Money and ethics debates In short, the gift relation (Titmuss, 1997 ), which underpins the statutory regulation of tissue transfer in West European, Canadian, Australian and many other jurisdictions, has failed spectacularly in the case of research oöcytes. This failure has thrown open the assumptions underpinning such regulation to unprecedented revision and debate. In particular, debate centres on the role of money in the regulation of supply. It is this feature of the debates which are perhaps most compelling for sociological and bioethical analysts, precisely because of the complex status of money in the history of post-war research ethics. Since the adoption of the Nuremberg Code, money has been allocated a highly circumscribed place among the standardised elements of bioethical reason. In the 1960's in particular, both sociologists and moral philosophers, most notably Titmuss (1997 ), and Jonas (1969) argued forcefully that citizens should participate altruistically in research because they had a moral obligation to contribute to the public good. The approach to compensation was subsequently liberalised by Institutional Review Boards in the USA during the 1970s, partly to increase the number of participants for clinical trials and partly in response to the construction of this issue as simply a matter of informed consent ( Lemmens & Elliot, 2001). However, compensation again became a matter of debate after 1980 following the death of Bernadette Gilchrist. Gilchrist was a National Institutes of Health nurse who was found to have concealed her history of bulimia from trial clinicians in order to receive payment made to trial participants ( Kolata, 1980). Since then, money has been central to debates about ‘undue inducement’, and posed as a potential threat to the principles of autonomy, justice and consent ( Emanuel, 2004 and Halpern et al., 2004). It is notable that Georg Simmel, in his magisterial analysis The Philosophy of Money, also recognises this coercive and singular power. In his account, money facilitates exchange, changes in ownership and the transfer of a surplus from one party to another. It does this precisely in its role as incentive, forcing the less willing party into trade once the price point is sufficiently high. Money disentangles objects from their owners by providing equivalence, while also facilitating impersonal circulation ( Callon, 1998). As Simmel (1990, 1900: 293) puts it, ‘exchange itself is embodied in money’. Buyers and sellers strike price, complete their transaction and are quits. It is for this reason that money transactions are posed as the opposite of the gift relation, substituting an antagonistic commodity market for the ethically and socially preferable gift for the public good ( Titmuss, 1997 and Waldby and Mitchell, 2006). Money transactions around tissues are further constrained by various Tissue Acts and Directives. For example, EU member states are signatories to the Oviedo Convention and the EU Tissue and Cells Directive, as well as various national statutes that prohibit the exchange of body parts for money ( Council of Europe, 1997). Hence, money may only be admitted into bioethical regulation in certain constrained forms that are understood to avoid the exercise of undue inducement and the formation of markets associated with frank monetisation. We refer here to the operation of money as pure liquidity, infinitely and instantly substitutable for other objects and infinitely mobile; the unconstrained conversion of assets into cash for example, or the striking of price purely as an effect of supply and demand, rather than the storing of value in more embedded forms. Liquidity is an expression of money's rapidity of flow, exchange and circulation (Bryan & Rafferty, 2013). Instead of this free, anonymous circulation of monetary value, money may be used in bioethical practice as reimbursement, the recovery of direct costs incurred in the act of donation (for example, travel costs) and the somewhat more vexed compensation. As a bioethical principle, compensation is intended to recognise less tangible costs to research participants, elements like inconvenience and risk, and to return the participant to a position of social and economic equilibrium through equivalent payment or in-kind services. In the case of research oöcyte procurement, however, the role of money, as compensation, as subsidy and as frank payment, has been opened up to unprecedented scrutiny and debate. This is in part due to the existence since the 1980s of a transactional market for oöcytes in some states in the USA and more recently in transitional economies like Russia and the Ukraine (Almeling, 2011), so that debates about research are necessarily shaped by the existence of such markets. It is also due to the 2005 Hwang scandal, in which Professor Hwang was revealed to have purchased large numbers of research oöcytes from commercial reproductive brokers in his failed attempts to create the world's first human SCNT cell lines (Baylis, 2009 and Leem and Park, 2008). This context has lead some prominent ethicists, particularly feminist ethicists, to argued that no payment in any form should be permitted for research oöcytes, because the risks are too great, the research is too experimental, and any form of payment (including compensation) would lead some women to overlook such risks (Dickenson and Idiakez, 2008 and George, 2008). Other bioethical commentators have argued that women who provide oöcytes for research should be considered as human research subjects, rather than donors. They argue that non-patient donors should be recruited and compensated for risk endured and time invested in the same way that healthy subjects are recruited for phase one clinical trials to test new drug toxicity (Ballantyne and de Lacey, 2008 and Thompson, 2007). However, Baylis and McLeod, in their critique of this approach, argue that there is no equitable way to avoid undue inducement, because the same rate of compensation has differential effects when considered by poor women or more wealthy women ( Baylis & McLeod, 2007). Indeed the incentive effect of even comparatively modest compensation rates has been demonstrated in field studies of reproductive oöcyte donation, among young unemployed or relatively impoverished women in Romania ( Nahman, 2012), Spain and the Czech Republic ( Bergman, 2011). To put it another way, in a global economy, the boundary between compensation and monetization is difficult to stabilize.
نتیجه گیری انگلیسی
We can see that, for our participants, different forms of money carried strong ethical associations when discussed in relation to oöcyte donation. Broadly speaking, the more liquid its form, the closer it approximated to a cash nexus and to transactional, impersonal relations of exchange, the more concerns were raised about its coercive powers and its inappropriate uses. In the case of their own oöcytes, most respondents thought that reproductive donation should remain within the realm of kinship and intimacy, as an exceptional act of generosity to a needy sister or friend. Because reproductive donation produced irreplaceable benefits, children and family, it constituted a non-fungible, singular good. To follow Simmel's (1990, 1900) analysis, it could not enter into any form of commensuration, nor the creation of value through calculated exchange, and hence it remains outside the realm of money transaction. This is a striking reassertion of the values of the gift relation, particularly given the proliferation of transactional markets for reproductive oöcytes in other parts of the world. However, it is not an expression of the anonymous gift relation between citizens advocated by Titmuss (1997 ). Rather, gift relations for oöcytes are mapped onto kinship relations, and kin-like relations, keeping their reproductive substance within family networks. In comparison, research donation was generally regarded as an acceptable realm for constrained forms of money. Oöcyte donation displaces other kinds of time, particularly productive, paid work time, and our respondents considered that this displaced time should be properly compensated. Here we can see that for our respondents, ethical equilibrium involves distributive fairness, the sense that potential donors should not be economically penalised for their generosity. While the young, non-patient women demonstrated a keen sense of the potential commercial value of research oöcytes, and considered that compensation rates should recognise this potential, they nevertheless were not prepared to advocate for a frank payment system, like that of New York. They considered that such unconstrained money would have deleterious effects on potential donors, pressuring them into unwise forms of exchange. Here we can see the respondents grappling with not only the ethics of donation itself but also its place in a larger social economy. They are well aware of the paradoxes and ethical dilemmas thrown up by the commercialisation of biomedicine, and are eloquent about the absence of simple solutions to the problems of equity posed by the commercialisation of tissues after donation. In the responses to the UK egg-sharing scenario, we can see a similar grappling with broad issues of equity and fairness, particularly the responsibility (in the respondents' eyes) of the state to make fertility treatment accessible to all, through national health subsidy. In summary, our respondents' expressed considerably unease about the coercive effects of monetised, transactional markets on vulnerable donors, while also demonstrating a sophisticated grasp of the ethical complexities of less liquid forms of exchange. The primary value of reproductive tissues for our respondents, their capacities to create the conditions for family life, kinship and family intimacy was in some degree of conflict with their other possible values in the worlds of medical science and commercial biotechnology. While in the family world, their reproductive tissues were beyond price, in the world of biomedical innovation and regenerative medicine they acquired a transaction value that potential donors had to negotiate and translate into their own sense of equity, distributive fairness and ethical appropriateness. This sense was in turn shaped by a national ethical context that has positioned affordable fertility as important to the national health, and reproductive tissues as non-transactional objects. This context sensitivity is an important methodological point, as it suggests that the elements of ethical reasoning, often treated as universally applicable, acquire culturally specific meanings and applications as they are used in different locations and traditions. It suggests a strong relationship between everyday health ethics and the broad shape of healthcare systems, a relationship that, in the Australian case, propelled our respondents into advocacy for decommodified reproductive health care. Certainly, this relationship could be explored in future research concerned with the formation of ethical reasoning in other areas of health practice and other locations. While Simmel (1990, 1900) proposes that money disentangles objects from their owners, we can see that it does not disentangle people from their social context, economic position and access to treatment. Rather they decide issues of value and equity in tissue donation in relation to larger systems of distributive justice and the national health.