Feminist bioethicists and philosophers have criticized the concept of autonomy and developed alternative ways of understanding it. They argue that the traditional understanding defines persons as being self-sufficient, unconnected, and individualistic. Nor do traditional accounts of autonomy take into account the importance of relationality. According to the feminists, the accounts ignore the fact that people are first and foremost products of their social history and current circumstances. Morality is a social construct and always inter-personal. Within this view it is insufficient to claim that autonomy as power to control personal desires and the power to protect oneself from others should be given a central place in bioethics.
The feminists maintain that the concept of autonomy can and should be transformed, and they present alternatives to the traditional concept of autonomy. Autokoenony and conscientious autonomy are examples of the feminist reformulations. These alternative approaches belong under the category of relational autonomy, which is said to “embody a dimension of social awareness and commentary that is lacking in most mainstream philosophical approaches.”581 Relational autonomy reflects the feminist understanding of moral agency as being social. People become autonomous only through relationships and social contexts, which in turn affect how people can express their autonomy skills.
However, as this has shown, the feminist approaches to autonomy are not without problems. In particular, the question of oppressive socialization and its effects on autonomy should be studied. Are individuals who are affected by oppressive socialization autonomous if their motivational structure is not self-imposed, but affected by a social order? I have argued that if a purely self-imposed motivational structure is a prerequisite for autonomy, then no one is autonomous. We all are affected by a social order from which we cannot escape. Obviously, some social and cultural explanations are more oppressive than others, and as such they should be criticized. However, the conclusion cannot be drawn that autonomy as a concept should be discarded because oppressive socialization cannot be supported.
In this connection, three issues are worthy of note.
First, relationships are both barriers to and advantages for autonomy. The challenge is to make these two sides of relational autonomy cohere. Second, even if personhood is inherently social, autonomy requires a certain degree of separate personhood. Therefore, a self must be to a degree a coherent unity. This is not to say that selves must be absolutely unified, coherent, or transparent. Minimal coherence, transparency, and unity suffice. Yet feminist philosophers are challenged to articulate “the nature of the minimally distinct and coherent self – and to determine the complex ways in which social
581 Friedman 2000b, 219.
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relationships bear on its prospects for autonomy.”582 Third, respect for autonomy can still be important to feminist bioethics. The aim of feminism is to fight oppression in its different forms. In relation to autonomy, this means finding appropriate ways to define respect for autonomy. Feminist bioethics suggests that this can be done by redefining informed consent as a communicative transaction that emphasizes the agency both of those who seek consent and those whose consent is sought. The elements of contextuality and relationality are important in this model. Consent is given in a particular context based on inter-personal relationships. Respecting autonomy means paying attention not only to the information given, but also to the manner in which the information is communicated.
I propose that Neil Manson’s and Onora O’Neill’s account of informed consent sheds light on how feminist bioethicists could redefine informed consent. Although Manson and O’Neill write explicitly from a standard bioethical perspective, their account of informed consent definitely has relevance for feminist bioethics. Like the feminist bioethicists, Manson and O’Neill are critical of individual autonomy, which they maintain is problematic for bioethics in general and for the justification of informed consent in particular.583 I further suggest that feminist bioethics could benefit from combining relational models of autonomy, such as conscientious autonomy and autokoenony, with informed consent as communication.
Together with a feminist understanding of autonomy as relational, the agency-based model of informed consent as communication shows that instead of individual autonomy, relational autonomy and agency should become central to bioethics.
The proposed model of informed consent as communicative transaction indicates a shift of focus from individual autonomy to relational autonomy and especially to the notion of agency. These realizations challenge feminists to determine more clearly how autonomy and agency should be understood and what their relationship is. I will discuss agency in more detail in chapter 5. For now it suffices to say that in feminist bioethics, agency may be a better concept with which to describe the relational nature of being than is individual autonomy. Agency includes the idea that, even though individuals (agents) may not be fully autonomous, they are nevertheless autonomous to a degree (having minimal or medial autonomy) and are thus capable of consenting.
What is important for the development of feminist bioethics as a sub-field is the realization that the transformation of bioethics is possible. Mainstream and feminist bioethics could improve and develop one another. The discussion of autonomy and informed consent as communication is an example of how the transformation could work in practice. From the evidence presented in this chapter, it is clear that the third transformation strategy for feminist bioethics results in a change to feminist values.
As shown in chapter 2.4, change is possible, but it cannot be done radically. Instead, the current
582 Friedman 2000b, 220.
583 Manson & O’Neill 2007, 16-22.
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concepts and practices should be redefined. Concepts, such as autonomy, and practices, such as informed consent procedures, are flexible and can be used in new and different ways to construct new social understanding that is in accordance with feminist ideas of relationality and contextuality.
The discussion of autonomy should guide feminist bioethics in its theoretical perspectives and practical applications. How can autonomy, then, be respected in concrete situations that require bioethical reflection? In the next chapter I discuss stem cell research and its use as a test case for feminist bioethics and the ability to employ the theoretical and conceptual tools that feminist bioethicists propose.
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4 Stem Cell Research and Use as a Test Case for Feminist Bioethics
In the Introduction, I defined the task of feminist bioethics as bringing new perspectives to the ongoing bioethical discussions. In the present chapter I take up this task and discuss how feminist bioethicists have been able to apply feminist critique and transformative perspectives to the most recent developments in biotechnology. I have chosen stem cell research as a test case for feminist bioethics and the ability of feminist bioethics to employ its methodologies in order to analyze ethical questions related to novel biotechnologies.
Stem cell research presents an interesting example. In view of the claim that feminist bioethics is unable to expand beyond questions of reproduction, stem cell research is linked to such reproductive issues as how donated eggs, embryos, and aborted fetuses are used in research. Clearly, such research affects women and infertile couples who donate eggs, embryos, and fetuses for research.
Yet reproduction is not the only ethical questions evoked by stem cell research. Other issues, such as the therapeutic potential of stem cells, the just use of resources, and the commercialization of human tissue, are relevant. Thus, stem cell research broadens the traditional perspective of feminist bioethics and offers an interesting case for feminist bioethics.584
It should be noted that as yet, there is no sustained feminist consideration of stem cell research, which is a rather new subject matter in bioethics. I will review how the subject has been treated, both by non-feminists and feminist bioethicists, and discuss the following ethical aspects: the moral status of human embryos, the therapeutic potential and just use of resources in relation to stem cell research, and the rights and protection of stem cell donors and recipients. Each section below gives the both non-feminist and non-feminist responses to these questions. Before turning to the bioethical discussion of stem cells, I will briefly discuss their characteristics and potential applications. I will also review official reports on stem cell research and use.
584 One could argue that stem cell ethics is a challenging test case for feminist bioethics because it remains largely in the arena of research rather than medical practice whereas feminist bioethics takes its orientation mostly from medical practice rather than from the literature on research ethics. However, it is wrong to assume that because the origin of feminist bioethics is linked to medical practice the field is defined solely by medical view. Instead, this challenge makes stem cell ethics an especially important case study for feminist bioethics. Given that on theoretical level the feminist transformation of bioethics has grown out of medical ethics, it is critical to evaluate how feminist bioethicists employ this transformation to another area of bioethics, namely that of research. Furthermore, it should be noted that the difference between research ethics and medical ethics is not necessarily clear-cut. On the definition, scope and justification of both medical and research ethics see, for example, Levine 2008, 211-221.
124 4.1 Introduction to Stem Cells and Stem Cell Ethics
Stem cells are cells that are capable of self-renewal and reconstitution of one or several types of tissue.
Human stem cells can be found in adults, fetuses, and embryos. During the embryonic and fetal stages of human development, all tissues and organs are formed of these cells. In an adult body, stem cells replenish tissues and cells. The absence of stem cells would lead human tissue to deteriorate, and eventually die. Human stem cells are divided into different categories according to their origins and their ability to differentiate. The categories are human embryonic stem cells (ES cells), human embryonic germ cells (EG cells), adult or somatic stem cells, and induced pluripotent stem cells (iPS cells).585
The main sources of ES cells for research are supernumerary embryos created by means of assisted reproduction techniques (ART), such as in vitro fertilization (IVF), but subsequently not used for reproductive purposes. Current medical practice recommends creating several embryos in one IVF cycle in order to maximize the chance for pregnancy and reduce the number of cycles needed.586 In order to create as many embryos as possible, several eggs are needed. Hence, women are encouraged to go through hormonal treatment in order to produce several eggs at the same time. Women go through the treatment before egg retrieval. As the result of the treatment, a woman’s body starts to act as it does in menopause. Right after this, the medication is changed to induce superovulation, that is, several ovarian follicles mature at the same time and the woman produces multiple eggs. Ova are then retrieved, either through laparoscopy or trans-abdominal ultrasonically directed oocyte recovery (TUDOR) under light sedation, and the retrieved eggs are fertilized with sperm on a petri dish.587 The current practice of creating several embryos during one IVF cycle results in embryos that are no longer needed for reproduction and thus remain in ART clinics. Couples or women who have undergone ART are given the choice to discard the supernumerary embryos or donate them, either for research purposes or to other women or couples for assisted reproduction.588
ES cells can be obtained from other sources as well, such as embryos created for research purposes by IVF or somatic cell nuclear transfer (SCNT). In SCNT a nucleus from an adult somatic cell is transferred to an enucleated ovum. The egg is then activated to develop without fertilization, and it can be induced to differentiate to the blastocyst stage in which pluripotent stem cells are isolated. Embryos can sometimes also be created for research purposes by dividing an embryo in
585 Okarma 2001, 4-5; Thomson 2001, 17-19; Kiessling & Anderson 2003, 3-5; Commission Staff Working Paper: Report on Human Embryonic Stem Cell Research 2003, 18.
586 See e.g. Human Stem Cells, Cloning and research 2005, 9.
587 Tiitinen & Hovatta 2001, 183.
588 Kiessling & Anderson 2003, 10; 37-38.
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two or by parthenogenesis (stimulation in vitro of an oocyte to initiate the duplication of the cell’s genetic information and then the division of the cell).589
ES cells are present immediately after fertilization. The fertilized egg begins to divide, and all the cells in a two-to three-day old embryo are similar. These cells are called totipotent stem cells for their unlimited capacity to form any human cells. Totipotent stem cells can also form a new embryo altogether as well as the placenta and other membranes around the embryo. At the age of four to five days, the fertilized egg reaches what is called the morula stage. At approximately the age of five to seven days, a hollow appears in the center of the morula, and the cells begin to differentiate into inner and outer cells. The embryo then reaches the blastocyst stage. The outer cells give rise to the tissues around the fetus, including the placenta. The inner cells constitute the fetus itself as well as some of the surrounding tissues. Pluripotent stem cells are created when the inner cell mass is isolated from the outer cell mass.
The isolated inner cells are called pluripotent stem cells. It is important to note that pluripotent stem cells as such do not occur in vivo and they cannot alone develop into an embryo if they are placed in a woman’s uterus.590
EG cells can be derived from the primordial germ cells of a five-to ten-week-old fetus. A germ cell is a general term for the sperm, egg, and their precursor cells. Primordial germ cells can be isolated from the gonadal ridge of aborted fetuses. During normal fetal development, the gonadal ridge develops into a testis or an ovary.591 Both ES cells and EG cells are pluripotent, but they are not identical in properties or character.
Somatic stem cells reside among differentiated cells in fetal and adult tissues and organs and regenerate the tissue in which they are located. They can give rise to a single cell type or to terminally differentiated cell types constituting a specific tissue or organ. Somatic stem cells are either progenitor or multipotent stem cells. Progenitor stem cells differentiate into only one cell type. For instance, spermatogonial stem cells can differentiate only into spermatozoa. Multipotent stem cells give rise to several cell types constituting a specific tissue or organ. For instance, haematopoïetic stem cells can differentiate into all the diverse blood cells. No adult stem cells that are pluripotent in capacity have yet been identified in a human body outside the womb. Somatic stem cells have been identified in tissues and organs of born human beings, including the brain, bone marrow, peripheral blood, blood vessels, skeletal muscle, the epithelia of the skin and the digestive system, the cornea, the dental pulp of the tooth, the retina, the liver, and the pancreas. Somatic stem cells are also found in the organs and tissues
589 Kiessling & Anderson 2003, 11.
590 Kiessling & Anderson 2003, 53, 74-75, 102-104.
591 Kiessling & Anderson 2003, 117-121.
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of aborted fetuses and can be obtained following an autopsy, for example from post-mortem brain tissue.
Haematopoïetic stem cells can be retrieved from the blood of umbilical cord at birth.592
Although adult stem cells are not pluripotent in capacity, some adult cells may be
“genetically reprogrammed to an embryo-like state by being forced to express genes and factors important for maintaining the defining properties of embryonic stem cells.”593 These are called induced pluripotent stem cells (iPS cells). It is still unknown whether or how iPS cells and ES cells differ in clinically significant ways. IPS cells are thought to provide efficient tools for drug development and the modeling of diseases. Moreover, they may create novel possibilities, especially for regenerative medicine (see below).594
The main interests in stem cell research lie, on the one hand, in basic science and, on the other hand, in the possible therapeutic and clinical applications of stem cell technology. Research on stem cells opens up a new view of basic developmental biology and on the basic mechanisms of cell differentiation and proliferation. Stem cell research may provide information about normal and abnormal human development and yield a deeper understanding of the causes of birth defects, infertility, and pregnancy loss. Stem cell lines can be used to discover the effects of chromosomal abnormalities in early human development. A better understanding of cell division and differentiation may provide information about such diseases as cancer. This kind of research may also provide knowledge about early childhood tumors, many of which are embryonic in origin. Eventually, stem cell research may suggest new strategies for therapies.595
Stem cell lines can be used for pharmacology studies and toxicology testing. Culturing specific, differentiated cell lines would make it possible to test a large number of chemicals on human tissue. Information about how differentiated cells respond to different potential drugs would help to distinguish useful from harmful medicinal products. In the opinion of some, pharmacology and toxicology testing are the most likely biomedical applications of stem cell research in the immediate future.596
In time, stem cells could be used in gene therapy. They could substitute for other means, such as viruses, as vehicles or bearers of genetic information for the therapeutic delivery of genes. This kind of therapeutic delivery system is being designed especially for the treatment of cancer. Stem cells could be cultured and directed to differentiate into specified cell types, which would then target specific cancerous cells and deliver direct treatments that will destroy or modify the problem cells.
592 Kiessling & Anderson 2003, 4-6, 8.
593 Stem Cell Basics 2009, 1/2.
594 Stem Cell Basics 2009, 1/2.
595 Okarma 2001, 5-6; Commission Staff Working Paper: Report on Human Embryonic Stem Cell Research 2003, 21.
596 Okarama 2001, 6-7; Thomason 2001, 21; Commission Staff Working Paper: Report on Human Embryonic Stem Cell Research 2003, 20-21.
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Stem cells are being investigated for novel therapeutic applications, often called regenerative medicine or cell-based therapies.597 Cell-based therapies can be divided into three groups:
transplantation of differentiated cells derived from stem cells, direct administration of stem cells, and stimulation of endogenous stem cells. The production of differentiated stem cell lines for therapeutic transplantation is one of the potential future applications of stem cell research. Serious illnesses and injuries can cause permanent cell and tissue damage. Stem cells could be cultured to produce a particular cell type, which could then be used for the repair of diseased or damaged tissue. The source for the differentiated stem cells could be ES or somatic cells, including the patient’s own stem cells. Such treatment could be used for diabetes, Parkinson’s disease, and muscle diseases. The direct administration of stem cells may be possible or needed in some cases. Stem cells would colonize in designated site in the body and differentiate into the desired cell type. The patient’s own stem cells could be stimulated to induce or augment self-repair of the damaged tissue. Stimulation of endogenous stem
transplantation of differentiated cells derived from stem cells, direct administration of stem cells, and stimulation of endogenous stem cells. The production of differentiated stem cell lines for therapeutic transplantation is one of the potential future applications of stem cell research. Serious illnesses and injuries can cause permanent cell and tissue damage. Stem cells could be cultured to produce a particular cell type, which could then be used for the repair of diseased or damaged tissue. The source for the differentiated stem cells could be ES or somatic cells, including the patient’s own stem cells. Such treatment could be used for diabetes, Parkinson’s disease, and muscle diseases. The direct administration of stem cells may be possible or needed in some cases. Stem cells would colonize in designated site in the body and differentiate into the desired cell type. The patient’s own stem cells could be stimulated to induce or augment self-repair of the damaged tissue. Stimulation of endogenous stem