quinta-feira, 28 de julho de 2011

Lei Antimanicomial

LEI No 10.216, DE 6 DE ABRIL DE 2001.

Dispõe sobre a proteção e os direitos das pessoas portadoras de transtornos mentais e redireciona o modelo assistencial em saúde mental.

O PRESIDENTE DA REPÚBLICA Faço saber que o Congresso Nacional decreta e eu sanciono a seguinte Lei:

Art. 1o Os direitos e a proteção das pessoas acometidas de transtorno mental, de que trata esta Lei, são assegurados sem qualquer forma de discriminação quanto à raça, cor, sexo, orientação sexual, religião, opção política, nacionalidade, idade, família, recursos econômicos e ao grau de gravidade ou tempo de evolução de seu transtorno, ou qualquer outra.

Art. 2o Nos atendimentos em saúde mental, de qualquer natureza, a pessoa e seus familiares ou responsáveis serão formalmente cientificados dos direitos enumerados no parágrafo único deste artigo.

Parágrafo único. São direitos da pessoa portadora de transtorno mental:

I - ter acesso ao melhor tratamento do sistema de saúde, consentâneo às suas necessidades;

II - ser tratada com humanidade e respeito e no interesse exclusivo de beneficiar sua saúde, visando alcançar sua recuperação pela inserção na família, no trabalho e na comunidade;

III - ser protegida contra qualquer forma de abuso e exploração;

IV - ter garantia de sigilo nas informações prestadas;

V - ter direito à presença médica, em qualquer tempo, para esclarecer a necessidade ou não de sua hospitalização involuntária;

VI - ter livre acesso aos meios de comunicação disponíveis;

VII - receber o maior número de informações a respeito de sua doença e de seu tratamento;

VIII - ser tratada em ambiente terapêutico pelos meios menos invasivos possíveis;

IX - ser tratada, preferencialmente, em serviços comunitários de saúde mental.

Art. 3o É responsabilidade do Estado o desenvolvimento da política de saúde mental, a assistência e a promoção de ações de saúde aos portadores de transtornos mentais, com a devida participação da sociedade e da família, a qual será prestada em estabelecimento de saúde mental, assim entendidas as instituições ou unidades que ofereçam assistência em saúde aos portadores de transtornos mentais.

Art. 4o A internação, em qualquer de suas modalidades, só será indicada quando os recursos extra-hospitalares se mostrarem insuficientes.

§ 1o O tratamento visará, como finalidade permanente, a reinserção social do paciente em seu meio.

§ 2o O tratamento em regime de internação será estruturado de forma a oferecer assistência integral à pessoa portadora de transtornos mentais, incluindo serviços médicos, de assistência social, psicológicos, ocupacionais, de lazer, e outros.

§ 3o É vedada a internação de pacientes portadores de transtornos mentais em instituições com características asilares, ou seja, aquelas desprovidas dos recursos mencionados no § 2o e que não assegurem aos pacientes os direitos enumerados no parágrafo único do art. 2o.

Art. 5o O paciente há longo tempo hospitalizado ou para o qual se caracterize situação de grave dependência institucional, decorrente de seu quadro clínico ou de ausência de suporte social, será objeto de política específica de alta planejada e reabilitação psicossocial assistida, sob responsabilidade da autoridade sanitária competente e supervisão de instância a ser definida pelo Poder Executivo, assegurada a continuidade do tratamento, quando necessário.

Art. 6o A internação psiquiátrica somente será realizada mediante laudo médico circunstanciado que caracterize os seus motivos.

Parágrafo único. São considerados os seguintes tipos de internação psiquiátrica:

I - internação voluntária: aquela que se dá com o consentimento do usuário;

II - internação involuntária: aquela que se dá sem o consentimento do usuário e a pedido de terceiro; e

III - internação compulsória: aquela determinada pela Justiça.

Art. 7o A pessoa que solicita voluntariamente sua internação, ou que a consente, deve assinar, no momento da admissão, uma declaração de que optou por esse regime de tratamento.

Parágrafo único. O término da internação voluntária dar-se-á por solicitação escrita do paciente ou por determinação do médico assistente.

Art. 8o A internação voluntária ou involuntária somente será autorizada por médico devidamente registrado no Conselho Regional de Medicina - CRM do Estado onde se localize o estabelecimento.

§ 1o A internação psiquiátrica involuntária deverá, no prazo de setenta e duas horas, ser comunicada ao Ministério Público Estadual pelo responsável técnico do estabelecimento no qual tenha ocorrido, devendo esse mesmo procedimento ser adotado quando da respectiva alta.

§ 2o O término da internação involuntária dar-se-á por solicitação escrita do familiar, ou responsável legal, ou quando estabelecido pelo especialista responsável pelo tratamento.

Art. 9o A internação compulsória é determinada, de acordo com a legislação vigente, pelo juiz competente, que levará em conta as condições de segurança do estabelecimento, quanto à salvaguarda do paciente, dos demais internados e funcionários.

Art. 10. Evasão, transferência, acidente, intercorrência clínica grave e falecimento serão comunicados pela direção do estabelecimento de saúde mental aos familiares, ou ao representante legal do paciente, bem como à autoridade sanitária responsável, no prazo máximo de vinte e quatro horas da data da ocorrência.

Art. 11. Pesquisas científicas para fins diagnósticos ou terapêuticos não poderão ser realizadas sem o consentimento expresso do paciente, ou de seu representante legal, e sem a devida comunicação aos conselhos profissionais competentes e ao Conselho Nacional de Saúde.

Art. 12. O Conselho Nacional de Saúde, no âmbito de sua atuação, criará comissão nacional para acompanhar a implementação desta Lei.

Art. 13. Esta Lei entra em vigor na data de sua publicação.

Brasília, 6 de abril de 2001; 180o da Independência e 113o da República.

FERNANDO HENRIQUE CARDOSO
Jose Gregori
José Serra
Roberto Brant

terça-feira, 12 de julho de 2011

GENETICS & BIOETHICS Reproductive Genetics and Gender Justice

by Mary B. Mahowald

Abstract
In recent years, the use of gender neutral-terminology has become commonplace. At times, the practice is awkward, as when a writer or speaker avoids generic terms that are also used exclusively for males. "Human" or "person" then replaces "man," and "he or she" is often used instead of merely "he." Despite the awkwardness, this practice may have the positive effect of reminding readers or listeners of a topic's applicability to women as well as to men or vice versa. Ethical support for the practice stems from the view that men and women should be given equal attention to ensure that sexism does not surface or prevail. Sexism is definable as unjust or unequal treatment of the members of one sex in comparison with the other. Like racism and classism, it is generally considered a moral wrong.

The position supported here is that the tendency to consider certain issues in a gender-neutral manner is misguided and unlikely to achieve its presumed end of gender justice. I argue that consideration of gender differences, as well as of the differences among individuals, is crucial to that goal and consistent with an ethic of care as well as of justice. While I focus on reproductive genetics to illustrate various points, my position is applicable to other issues as well. Poverty, aging, and violence, for example, all involve a gender-specific component in their impact on people's lives.

To develop my argument I examine the concept of gender justice and relate this to different versions of feminism and a care-based ethic. I thus present alternative theoretical approaches not only to the use of gender-neutral language but to the entire range of issues in reproductive genetic testing considered in this book. My goal is to prod the reader to come to his or her own conclusions about the meaning and desirability of gender justice and its applicability to issues of reproductive genetics. I also propose a modest strategy for promoting the goal of gender justice. Preliminarily, I offer examples of ways in which current discussions illustrate the misguided tendency to use gender-neutral language.

Gender-Neutral Language in Reproductive Genetics
Reproductive endocrinologists write about infertile couples even when it is clear that one partner is infertile and the other is not. Infertility, it is claimed, is a problem of couples rather than of individuals because both male and female partners are essential contributors to the reproductive process. Similarly, prenatal testing is generally offered to couples rather than individuals despite the fact that the main modalities of testing are performed on the female partner (Bonnicksen, 1992, p. S5; Lippman, 1991, pp. 38-39). Pregnancy terminations and fetal therapies in response to prenatal diagnoses are also discussed in the context of couples, although neither procedure requires participation or risk by the male partner (Elias and Annas, 1987, pp. 121-142).

Oftentimes parental rights and responsibilities are considered generically--as if mothers and fathers are equally involved in childbearing and childrearing (Blustein, 1979, pp. 115-119). Gamete donors are also assumed equal despite the fact that the risk and discomfort of ovum donation is not present in sperm donation (Jones, 1992, pp. 753-754). It has even been suggested that the rights of sperm donors are, or should be, equal to those of women who not only provide ova but undergo artificial insemination, gestation, and childbirth as well.

Gender differences among researchers in genetics and clinical geneticists (Pencarinha, Bell, Edwards, & Best, 1992) are rarely if ever noted despite the gender imbalance that is evident between those in the more powerful, prestigious, and highly paid positions, and those at the lower end of the spectrum. The writings of Dorothy Wertz and John Fletcher, along with Nancy Zare and her colleagues, are welcome exceptions to this trend (Wertz and Fletcher, 1989, 1992; Zare, Sorenson, & Heeren, 1984). Gender differences are also rarely noted among those who have primary care responsibility for those affected by genetic conditions. By far, the majority of these are women whose primary care of children, the ill, and the elderly has led to the phenomenon that Diana Pearce characterizes as "the feminization of poverty" (1978, p. 28).

Most if not all of the preceding examples suggest the possibility of injustice towards women. It is women whose bodies undergo discomfort and risk in the course of prenatal testing, and women whose physical and emotional energies are more likely to be consumed by the exigencies of care for those who are genetically disabled. With regard to gender differences involving genetic conditions, however, the opposite point may be made. X-linked diseases, for instance, mainly affect men; women have the preempting advantage of a second X chromosome. It is women, nonetheless, who as carriers of X-linked diseases, bear the onus of having "given" their affected sons the disease. In addition, some genetic conditions (for example, cystic fibrosis, Down syndrome) generally cause infertility in affected men but not in affected women. Although men never face health risks due to pregnancy, pregnancy presents a particular health threat to women affected by certain genetic diseases (for example, cystic fibrosis, diabetes, sickle cell anemia) (Lemke, 1992, pp. 213-214; Koshy and Burd, 1991, p. 587-590).

All of these empirical differences between women and men involving reproductive genetics are ethically problematic, and largely so because justice or equality is often construed as an ethical demand to treat all individuals in the same way. Clearly, it is not possible to treat women and men in the same way with regard to reproduction. One cannot, for example, retrieve ova from women as easily as sperm are retrieved from men. One cannot perform abortions or fetal therapies on men. So if there is such a thing as gender justice in reproductive genetics, it must mean something different than treating men and women in the same way.

Gender Justice and Different Versions of Feminism
Gender and sex are commonly distinguished on the grounds of the difference between socialization and biology, or nurture and nature. Sex is biologically determined, and gender, although usually based on sex assignment, is established through socialization (Jaggar, 1983, p. 112). Sex generally refers to physical characteristics, whether genetic, anatomic, or functional; gender refers to behavior. The differences between males and females and between men and women, which are key to understanding sex and gender, are commonly seen in terms of privation or negation. For example, the female lacks testes and penis; the male is unable to bear or nurse a child. To be male, then, is not to be female, and to be a woman is not to be a man.

Furthermore, differences are commonly construed as connoting inequality. This construct is valid when its reference point is the same for the differences being compared, so that one difference represents more or less of the other--for example, when one person's income or education is compared with another's income or education. The construct is invalid when the reference point is not the same because there is then no common basis for comparison--for example, when one person's maleness is compared with another person's femaleness. Differences do not imply inequality if they represent incomparable factors, that is, factors that have no common reference point.

Gender injustice, sexism, or sex inequality does not necessarily occur when men or women are regarded or treated differently but when they are regarded or treated in a manner by which the essential differences of one sex are interpreted as implying their inferiority to the other, and they are treated accordingly. The reference point to which women are typically compared is men, rather than the common humanness in which men and women participate equally. In The Second Sex, Simone de Beauvoir describes this phenomenon as one in which "man defines woman not in herself but as relative to him," that is, as "the Other" who is "the incidental, the inessential as opposed to the essential" (1971, p. xvi). In contrast, gender justice occurs when men and women alike are judged according to the standard of their common humanness, respecting the differences that they embody as gendered individuals without imputing inferiority to one or the other on that basis.

Inequality, even when validly established, is not necessarily unjust. It is not unjust, for example, that older people typically have a wider range of experiences and a more extended life span than younger people. Nor is it unjust that some people are more talented, more intelligent, more attractive, or more athletically gifted than others. In comparing unequal distributions of such factors among individuals, H. Tristram Engelhardt suggests that such differences are due to failures of fortune rather than fairness (1986, p. 342). It is unfortunate, then, that some people are disabled while others are fully abled, but it is not unfair that this is so. Engelhardt would probably not claim that it is unfortunate for women that they are not born male; yet such a statement would be empirically supportable on grounds that women are more likely than men to be poor and dependent on the health care system for themselves and others, and less likely than men to be well-educated or to find positions of power and prestige (Mahowald, 1993, pp. 39n.1, 219-20).

Englehardt's distinction between what is unfortunate and what is unfair is based on the fact that no one is responsible for the differences that create inequality. But this alone fails to address what is done or not done about the differences by those who, arguably at least, have responsibility subsequent to that creation. Different concepts of justice may be introduced to justify alternative means of responding to differences. The alternatives range from procedure-based libertarian theories such as Robert Nozick's, through theories that attempt to combine elements of both libertarian and egalitarian reasoning such as John Rawls's, to idealistically egalitarian theories such as Karl Marx's. Each of those involves a different view of gender justice and is thus relatable to different versions of feminism.

A libertarian theory of justice gives priority to the liberty of individuals in choosing procedural mechanisms for the distribution of goods. The economic system thus supported is capitalistic, individualistic, and rights-centered. Self-interest is the force that motivates individuals to freely enter, continue, and withdraw from socioeconomic arrangements, whose rules they are bound--by virtue of their agreement--to observe. As Nozick paraphrases Marx, the libertarian criterion for decisions regarding distribution is: "From each as they choose, to each as they are chosen" (1974, p. 160). This concept of justice is essentially procedural rather than substantive. Depending on differences in the individuals whose liberty is equally respected under the aegis of the theory, the material gaps between them are inevitably widened through maximization of individual liberty in a laissez-faire environment. Nozick's dictum involves no restriction of the content of one's choices; it therefore permits racist, sexist, and classist choices as well as choices that are morally praiseworthy - so long as such choices are consistent with procedural fairness.

In reproductive genetics, both libertarian and liberal feminist arguments have been applied to specific issues. From a libertarian perspective such as Engelhardt's, for example, as long as a woman can pay for prenatal diagnosis and treatment, and is fully informed about the risks she freely undertakes, reproductive genetic testing is ethically justified. Since the emphasis is on individual liberty, however, the tendency to treat those issues in the context of couples rather than individuals is inappropriate. Lori Andrews recognizes the inappropriateness when she argues that a feminist position on a woman's right to control the disposition of her own body is contradicted by feminists who oppose the rights of individual women to provide ova or gestation in exchange for money (1988, p. 82).

Liberalism and liberal feminism are also associated with an emphasis on individual liberty. However, liberal feminism defends an equality of opportunity that reduces the inequality that is theoretically justifiable in a libertarian system. Some of the implications of the liberal feminist position are clear, but some are not. It seems clear, for example, that women as well as men have a right to basic health care and to an environment that is free of contaminants that might damage their own and their offspring's health. It is not clear whether equality of opportunity requires the availability of prenatal counseling and intervention for all women. The extent to which government is obliged to pay for the reproductive health care of those who cannot pay for it themselves is a matter on which liberal feminists are likely to disagree. Some would support a minimal level of government subsidies, leaning closer to a libertarian approach; others would support a maximal level, with more egalitarian implications.

Rawls's theory of justice is an effort to combine liberal and egalitarian considerations. His first principle of justice incorporates the liberal's emphasis: Individual liberty should be limited only to the extent that it is necessary to ensure the same liberty for others. Rawls's second principle of justice expresses the egalitarian component of his theory: Social and economic inequalities should be arranged so that they benefit the least advantaged in a situation of equality of opportunity for all (1971, p. 302). In Justice, Gender and the Family, Susan Moller Okin endorses those principles of justice, but criticizes Rawls for assuming that family constructs are just (1989, p. 97). She develops a contrasting liberal feminist account using data illustrating that the inherently patriarchal structure of the family is unjust, and that injustice toward women is often triggered by family-related practices and attitudes.

Okin's theoretical critique extends to "false gender neutrality" in language as well as in action. She insists on paying attention to gender differences that might provoke injustice, even while arguing for an ideal of a "genderless family." Unlike most philosophers, she offers specific recommendations: "Because children are borne by women but can (and, I contend, should) be raised by both parents equally, policies relating to pregnancy and birth should be quite distinct from those relating to parenting. Pregnancy and childbirth, to whatever varying extent they require leave from work, should be regarded as temporarily disabling conditions like any others, and employers should be mandated to provide leave for all such conditions". (1989, p. 176). The same recommendations are applicable to issues that arise in reproductive genetic testing. For example, because men do not undergo the risk and discomfort of prenatal diagnosis, the time and cost of the procedures should not be born by women alone but should be shared with men either directly (as couples paying for services) or indirectly (through employer or government coverage).

Critics of liberal feminism may focus either on its liberal component or its feminist component. The liberal component has been critiqued for its tendency to treat individuals atomistically, emphasizing rights rather than relationships and responsibilities. The feminist component has been critiqued by feminists themselves for subscribing to an essentially male model of rationality and autonomy. One of the results of this subscription, according to Alison Jaggar, is a "normative dualism" with regard to our evaluation of the relationship between mind and body (1983, p. 40). In a society that generally views activities of the mind as superior to those of the body, women are likely to be less esteemed because gestation, birth, and early nurturance of children tie them more to physical than to mental activities. Jaggar also maintains that a liberal feminist emphasis on individual autonomy provides an inadequate account of moral goodness. Beyond respect for others' choices, the ends we pursue as individuals and as a society ought to promote the survival of humans and their thriving (Tong, 1989, p. 37).

The normative dualism that Jaggar criticizes is apparent in attitudes and practices with regard to genetic diseases that are mainly associated with mental retardation. For example, the desire to avoid the birth of a child with Down syndrome is the most common reason for women to undergo prenatal testing (Elias and Annas, 1987, p. 84). Although specific physical findings and other medical problems are often associated with Down syndrome, the principal problem the condition presents is mental retardation. Jaggar's insistence that other values besides respect for autonomy should be considered in our moral judgments is also applicable to reproductive genetics. The justification for non-directive counseling, for example, is primarily based on respect for the client's autonomy. Jaggar and other socialist feminists would argue that considerations of beneficence and social justice are relevant to the counseling situation as well.

Like Angus Clarke, who describes non-directive counseling as "the Holy Grail," socialist feminists are concerned not only about women's right to abortion but also about "the social pressures that may be exerted on couples, and especially on women, to terminate a pregnancy thought to be affected by a genetic disorder" (Clarke, 1991, p. 1000). They would further agree with Clarke's concerns about the implications of prenatal diagnosis for "society as a whole, with long-term repercussions for the status of, and provision for, the mentally and physically handicapped" (p. 998). Consideration of these repercussions through attention to differences between individuals as well as groups is crucial to the goal of social equality.

Communitarian or socialist thinkers are the principal critics of liberal feminism (Tong, 1989, pp. 32-37). Communitarians tend to emphasize familial or affective relationships, while socialists emphasize political relationships and the importance of equality as a social goal. A communitarian ideology may be reinforced by the care models of moral reasoning that Carol Gilligan (1982) and Nel Noddings (1984) have developed. Gilligan's studies indicate that women are more likely than men to base their ethical decisions on considerations of care rather than justice. Noddings argues that ethical caring is based on the inclination of women to care for their offspring. Although both models are based on women's experience, some feminists are critical of them because they may promote exploitation of women's natural propensity to care for others (Sherwin, 1992, pp. 49-57). Because women are the primary caregivers, both formally and informally, of persons affected by genetic conditions, possibilities for exploitation are evident in that context. If caring behavior were as esteemed and rewarded as behavior based on a justice model of reasoning, exploitation would probably be avoided.

Jaggar distinguishes between socialist and Marxist feminism on grounds of the primacy given to the oppression of women (1983, p. 12). Marxist feminists, she claims, see women's oppression as an expression of the fundamental economic oppression that separates the bourgeoisie from the proletariat. As Marx put it, the degree of humaneness that is evident in the relationship between men and women is an indicator of the progress in humaneness of the entire society (Tucker, 1972, p. 69). However, the goal of correcting injustice or inequality between men and women is subordinate to the goal of overcoming economic oppression between capitalists and workers. In contrast, socialist feminists see the oppression of women as the primordial social injustice, with other forms of oppression stemming from this. Overcoming gender inequality is thus central to the socialist feminist agenda.

Socialist feminist concerns about reproductive genetics target the problem of access to genetic services, treatment options, and information. Admittedly, it is difficult if not impossible to disentangle the influence of cultural values from the influence of socioeconomic determinants on access to prenatal counseling and interventions. Among those who undergo counseling, however, poor women and women of color are clearly underrepresented (Reynolds, Puck and Robinson, 1974, p. 180; Nsiah-Jefferson & Hall, 19879, pp. 93-95). They are even more underrepresented, in fact comparatively absent, in the ranks of those who seek and obtain expensive reproductive technologies such as in vitro fertilization and surrogate gestation (Nsiah-Jefferson & Hall, 1989, pp. 108-111). Poor women and women of color are more likely to be numbered among those who provide genetic services through their own bodies (such as through egg "donation" and commercial surrogacy) and through their own labor (such as, through employment among the less prestigious and less rewarded ranks of health care workers) (Mahowald, 1993, pp. 25, 102-104).

Even in cases where genetic information is provided, the options for poor women are limited through legislation that precludes the possibility of pregnancy termination for those unable to pay. For individuals who cannot terminate the gestation of an abnormal fetus because of the cost of the procedure, prenatal diagnosis may not be worth the risk and discomfort that it entails. For those who have no coverage through insurance or government reimbursement plans, even the advantage of ascertaining that the fetus has no genetic abnormalities may not be worth the cost of prenatal diagnosis. Whether considering the option of prenatal diagnosis or pregnancy termination, the onus of the procedure falls on women rather than men.

From a socialist feminist standpoint, society and individuals alike are morally bound to take account of this discrepancy and attempt to reduce it. Minimizing the cost and risk of the procedures and maximizing access to them would constitute such an attempt. One way of reducing the gender gap in this regard would be requiring the partners of women who undergo prenatal diagnosis and pregnancy termination to pay for the procedure. The spread of the feminization of poverty must be checked on several fronts in order to provide women with an equal balance of health prospects in comparison with men.

Socialist feminists are also concerned with the implications of genetic testing for the availability of jobs and progress in employment. The U.S. Supreme Court's decision in the Johnson Controls case is reassuring with regard to the legality of employment practices that restrict women's opportunities because of their reproductive capacity. But that decision does not negate the tendency of employers to be influenced by such concerns and act in ways that are discriminatory towards women. Insurance practices are another area in which gender discrimination relevant to reproductive genetics is sometines practiced (Natowicz, Alper, & Alper, 1992, p. 467).

As more and more genetic information is obtained through the success of the Human Genome Project, the possibilities for discrimination increase. Socialist feminism rejects such practices through its critique of the capitalistic ideology that supports them. Without subscribing to a totalitarian system, social feminism supports limitation of individual freedom to promote social equality. Lest this be construed as a radical proposal, it should be recognized that American society already endorses anticapitalistic or socialistic measures such as a graduated income tax, government subsidies to farmers, and welfare payments for the poor. Government regulation intended to avoid genetic discrimination based on gender would also involve curtailment of liberty for the sake of equality. To be effective, however, such regulation needs to take explicit account of the gender-based differences that lead to discrimination. To the extent that the regulations limit liberty to promote equality, they are socialist in their orientation.

Admittedly, the term socialist has been in disrepute since the demise of the Soviet Union and other officially socialist or Marxist states. However, the term itself is not a crucial label for the critique of individualism and liberalism that many feminists support. What is essential to the critique is that it starts with a concept of human beings not as isolated individuals but as individuals whose meaning and reality are definable and sustainable only in the context of their relationships to others. This emphasis on relationships is common to socialist feminism, communitarian versions of feminism, and to the ethics of care or caring that Gilligan and Noddings have developed. Noddings claims the relationship between mother and child as ethically paradigmatic, and argues for a broader application of the care embodied in that relationship (1984, pp. 43, 79-81). Gilligan bases her model of moral reasoning on studies of girls and women confronting ethical dilemmas in their own lives (1982, p. 3). Women, she found, typically reached their decisions through consideration of responsibilities derived from relationships to others rather than consideration of their own or others' rights as individuals. They were more likely than men to be influenced by concerns of caring toward those with whom they had established ties than by concerns of justice toward those they did not know.

Wertz has examined whether Gilligan's distinction between justice and care models of reasoning is supported by studies of providers of genetic counseling (1993, p. 85). The justice model encapsulates the traditional approaches to ethics that (for the most part male) philosophers have pursued for centuries. Whether those approaches appeal to consequences through utilitarianism or to a priori rules developed through deontological theories, they maintain that moral decisions must be based on abstract, impartial, and universalizable principles. In contrast, the care-based reasoning that women tend to practice involves concreteness, partiality and particularity. Wertz's work, along with a recent study by Pencarinha (1992), suggests that women who work as genetic counselors do not fit neatly into either of Gilligan's models of moral reasoning.

Nonetheless, Wertz maintains that gender is "the single most important determinant of ethical decision-making" among doctoral level medical geneticists around the world (1993, p. 81). Although the majority of those surveyed were committed to nondirective counseling, men were 2 to 13 times (depending on the country) more likely to be directive. The women (35% of the respondents) in Wertz and Fletcher's study were also more likely than the men to emphasize client autonomy and to express concern about the families of their clients (Wertz & Fletcher, 1992, p. 236). Their emphasis on the client's autonomy, often expressed in phrases like "the right to know" and "the right to decide," reflects the philosophical tradition of ethics that care-based thinkers generally reject. The concern about families, however, reflects the critique of individualism with which care-based thinkers agree. This critique is the point at which a care ethic and communitarian or socialist versions of feminism converge through their emphasis on relationships.

Pencarinha and her colleagues compared the ethical decision making of masters level genetic counselors and doctoral level (M.D. or Ph.D.) medical geneticists in the United States. In contrast to the medical geneticists, the majority of whom are men, 94% of genetic counselors are women. The genetic counselors in Pencarinha's study primarily stressed the autonomy of their individual clients as their guiding ethical norm. They were even more likely than medical geneticists to be nondirective, to respect client confidentiality even in cases where nondisclosure might threaten others' welfare, and to refer clients to another center for sex selection (1992, pp. 23-28). To the extent that their respect for the autonomy of individual clients overrode concerns for other family members, genetic counselors in Pencarinha's study departed from a care-based model of moral reasoning and illustrated traditional ethical (Kantian) reasoning even more than did the women in Wertz and Fletcher's study. Attributing this priority to autonomy is consistent with liberal and libertarian versions of feminism.

Toward a Feminist Care-Based Ethic
Just as men and women are not necessarily incompatible or unequal because they are different, a care-based ethic and a justice ethic are not necessarily incompatible or unequally valid because they are different. Gilligan suggests that there are liabilities to either approach. The potential error of a justice focus, she says, is "its latent egocentrism, the tendency to confuse one's perspective with an objective standpoint or truth, the temptation to define others in one's own terms by putting oneself in their place." The liability of a focus on care is that it tends "to forget that one has terms, creating a tendency to enter into another's perspective and to see oneself as 'selfless' by defining oneself in others' terms" (1987, p. 31). Historically, those liabilities have given rise to two common distortions of justice and care. In an ethic of justice the distortion is that human is equated with male; in an ethic of care the distortion is the equation of care with self-sacrifice. The liabilities are avoided and the distortions are corrected in an ethic that incorporates both justice and care. According to Pencarinha's study, women who work as genetic counselors illustrate elements of both justice and care.

Genetic counselors may be particularly inclined to emphasize client autonomy because they recognize that the lives of their clients, most of whom are women, are affected more than are their male partners' by decisions involving reproductive genetics. They may be more inclined to recognize this gender difference because most of them are women. This practice is feminist to the extent that it promotes or is intended to promote gender justice.

To the extent that genetic counselors honor women's autonomy, they also support the reasons for which individual women make their reproductive decisions. If Gilligan is right, these reasons tend to be based on the complex set of caring relationships that each woman bears to others. Maximizing women's autonomy in decisions about reproductive genetics is thus a way of maximizing caring. Because women in our society are in several ways less powerful than men (for example, economically), maximizing their autonomy is also a way of promoting equality or reducing inequality between them and men. Gender justice, implemented through support for the autonomy of those most affected by reproductive decisions, is a means, perhaps even an indispensable means, through which to realize an ethic based on caring.

While questioning whether either orientation is, in and of itself, adequate from a moral point of view, Marilyn Friedman maintains that care and justice are compatible (1987, pp. 105). If justice means giving people their due, it demands determination of what constitutes due care for each. The application of this concept to reproductive genetics is obvious: the practitioner must recognize and respond to different needs or interests on the part of each client. At times the needs of different clients are at odds with each other, as when the counselor learns that the assumed father of a child is not genetically related to that child. Wertz's and Pencarinha's studies show that most genetic counselors believe that the confidentiality of the child's mother should be upheld in such situations. Depending on the risk that not knowing entails for others, however, nondisclosure may be morally unjust. A caring ethic is thus different from an ethic of health care that focuses solely on the client because it involves care for all of those affected by the care's decisions. A just caring ethic requires efforts to distribute burdens and benefits in an equitable manner.

The focus on women that constitutes the subject matter of this book is a means of overcoming the mistaken tendency to treat reproductive genetics as if it were gender-neutral. This focus is appropriately represented through a predominance of women authors. Although some men grasp and communicate the significance of women's role in reproductive genetics better than do some women, women know better than men what women experience. Accordingly, feminists have argued recently for the necessity of a feminist standpoint in decisions and policies that particularly affect women. Sara Ruddick describes such a standpoint as "an engaged vision of the world opposed and superior to dominant ways of thinking" (1989, p. 129). The rationale for a feminist standpoint is both ethical and epistemological. In reproductive genetics, ethical arguments for a feminist standpoint are based on the fact that women's bodies and lives are generally more affected than men's by reproductive decisions. As abortion legislation illustrates, this gives them the more compelling right to determine the outcome in situations of conflict.

The epistemological argument for a feminist standpoint involves what Donna Haraway affirms as "the embodied nature of all vision" (1988, p. 581). Haraway regards the impartial standpoint of traditional ethics as neither feasible nor desirable. The alternative she proposes is "a doctrine of embodied objectivity," which involves "partial, locatable, critical knowledge sustaining the possibility of webs of connections called solidarity in politics and shared conversations in epistemology" (1988, p. 584). Only through such partial perspectives, she claims, can we approach objectivity.

A feminist standpoint may draw on any of the diverse versions of feminism because all of these involve a remedial emphasis on women. In fact, the enrichment of perspectives that their inclusion involves can only be maximized by including representatives of diverse feminisms. Women are also distinguishable from one another by class, race, and sexual orientation, and by size, age, politics, religion, and profession. Thus, while they belong to the non-dominant group by gender, some women belong to the dominant group by race or class. Just as women have a privileged epistemological status vis-a-vis men, the same is true for women of color vis-a-vis white women, and clients or patients vis-a-vis the professionals (women or men) who treat or counsel them. Moreover, because women as individuals are not definable through any collection of categorical designations, the rationale that underlies a feminist standpoint must be extended to a recognition of each woman as a unique individual. To promote gender justice for all women, individual differences well as gender and other group-based differences must be taken into account.

How, practically, can so many differences be fully considered in order to effect just policies and decision-making in reproductive genetics? An honest answer to this question is "They can't." This does not imply, however, that it is useless to consider the differences and to attempt to minimize the inadequacy of their consideration. Accordingly, I wish to conclude with the recommendation of a single, modest guideline that the preceding discussion suggests with regard to decisions and policies in reproductive genetics. It is simple, obvious, and demanding: Listen to women.

Aside from the fact that women may have a different moral voice than men, they have a different role, experience and responsibility with regard to reproduction. The only way to adequately consider these differences is to learn about them from women themselves. Legislative and policy-making bodies that address issues in reproductive genetics need more, and more diverse, women in their ranks. Adequate representation of women may be an unachievable goal because women are so diverse as individuals and as participants in other groups. Nonetheless, their representation could surely be improved by specific measures intended to facilitate that. For example, if we valued the participation of poor women enough to pay them and ensure that their income would not be threatened by their participation, we might increase our socioeconomic representation. If we were willing to challenge the political pragmatism or homophobia that has triggered the exclusion of lesbians and homosexuals from participation, we might also broaden our representation. Participation of more and more diverse women, as well as participation of nondominant groups of men, is a plausible goal, although one not managed without cost and effort.

If broader representation were implemented as a means of reducing the inevitable "nearsightedness" of the dominant class or classes, the different voices of women and minorities would certainly be heard in decisions and policies made about reproductive genetics. They would be heard as practitioners and clients, as policy makers, and as teachers of those who belong to the dominant class. Such representation would also mean that tokenism, such as having one woman or African American serve on a policy-making committee, is not enough, particularly when the group's decisions disproportionately affect those who are not dominant. When a single individual represents several non-dominant groups, her voice and vote should count additionally for each of the groups represented.

Unfortunately, there are some situations in which too few nondominant persons are available to provide fair representation. For example, very few of those trained as genetic counselors are persons of color (Pencarinha et al., 1992, p. 21). Self-consciousness about one's inevitable nearsightedness is demanded of the dominant individuals who render the representation disproportionate. With regard to gender differences, such self-consciousness involves acknowledgment of a possible sexist bias even on the part of those who consider themselves free of such bias. As Virginia Warren observes, "Sexist ethics would never appear sexist [even to the person practicing it]. It would be clothed in a cloak of neutrality because favoring some group or position would be unthinkable". (1989, p. 74) A similar observation applies to groups distinguishable by race, class, mental or physical ability, and sexual orientation. To those who consider themselves capable of total impartiality, inclusion of others' perspectives seems unnecessary.

Listening to other women is as important for women as listening to women is for men. Such listening is often demanding because it requires the listeners to refrain from exercising their own powers of speech temporarily. It also requires psychological openness to new and critical ideas, that is, a kind of intellectual humility. At times, the learning that comes from listening changes our views of ourselves as well as of others, but even as we grow through listening, so do the others. A necessary means to continuing the growth is to keep on listening.

Listening to women, and learning from and acting on what we hear from women, constitutes an indispensable means of promoting gender justice in reproductive genetics. While different versions of feminism support different degrees and concepts of social equality, they concur about the importance of listening to women's different voices.


Acknowlegments
Research for this paper has been supported by grant #HG00641-01 from the National Center for Human Genome Research of the National Institutes of Health.

Notes:

The Oxford English Dictionary (1989) defines sexism as "the assumption that one sex is superior to the other and the resultant discrimination practiced against members of the supposed inferior sex, esp. by men against women"; Webster's New World Dictionary (1984) defines it as "the economic exploitation and social domination of members of one sex by the other, specif. of women by men." Both definitions suggest that the inequality or injustice of sexism involves the inappropriate use of power. For a critical consideration of power and a criterion for distinguishing between its moral and immoral uses, see Mahowald, 1993, pp. 256-59.
Howard Jones, for example, who with Georgianna Jones developed the first successful in vitro clinic in the United States, maintains that "physicians should realize that they are treating not infertility, but a couple - two individuals - who are infertile" (Jones, 1992, p. 751).
In re Baby M 217 N.J. Super 313 (1987).
Women comprise approximately 21% of genetics researchers who have been awarded grants by the National Center for Human Genome Research of the National Institutes of Health (Training Grants Active on 8/1/92), National Center for Human Genome Research.
Of 677 doctoral level medical geneticists from 18 countries who responded to a survey by Wertz and Fletcher, 65% were men. The women in this group were more likely to have a Ph.D. and less likely to have an M.D. (Wertz and Fletcher, 1992, p. 234). Of 199 masters level genetic counselors in the United States surveyed by Pencarinha et al., only
6.5% were men (Pencarinha, 1992, p. 21).
As Jaggar remarks, however, if "we acknowledge human biology, including sexual biology, as created partly by society, and if we acknowledge human society as responding to human biology, we lose the clarity of the distinctions between sex and gender" (1983, p. 112).
A classical exemplar of this construct is Thomas Aquinas, who maintains that in the first state of nature, that is, nature as created by God, "there would have been some inequality, at least as regards sex, because generation depends upon diversity of sex." ("On the First Man," Q. 96, cited in Mahowald, 1992, p. 284).
This point, along with a concept of equality as a social ideal and guidelines consistent with gender justice, is developed in chapter 1 and applied to a variety of issues involving women and children in Mahowald, 1993.
One wonders whether Nozick's use of the gender-neutral "they," in light of its grammatical incorrectness, is deliberate.
Some critics argue that the liberal's emphasis on the priority of the individual constitutes an impediment to human community. Jean Bethke Elshtain, for example, claims that "there is no way to create real communities out of an aggregate of 'freely' choosing adults" (1986, p. 442).
Automobile Workers v. Johnson Controls, 499 U.S. 187 (1991).
In another article I have called this concept "proportionate representation," and have applied it more generally to issues in bioethics. See my "On Treatment of Myopia: Feminist Standpoint Theory and Bioethics," in Susan Wolf, ed., Feminism and Bioethics (Oxford University Press, forthcoming).


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Bioethics for Beginners - How Do You Enter the Field of Bioethics?

Professor McGee sheds some light on the path to the field of bioethics
by Glenn McGee


Things have changed dramatically in bioethics in the past three years; I would say that the changes compare in magnitude with those in the software industry more than with the disciplines of philosophy, sociology, medicine or anthropology. Only one of the changes in bioethics is obvious from a cursory look at the world of academia: the enormous and expanding market for those with interest in and talent for bioethics. That change is illusory though, because while professional academics with Ph.D. degrees are always invited to apply for positions in bioethics, more and more of the appointments are being made to physicians trained in a special form of health services research (empirical research of the kind taught at schools of public health like Johns Hopkins and Harvard) that has begun to go by the name bioethics as well. Also, more and more of the academic appointments in bioethics are being made to scholars for whom bioethics, rather than generalized training in philosophy with an emphasis on bioethics or applied ethics, is the focus. While there are only a few Ph.D. programs in bioethics per se, there are Ph.D. programs that can provide essentially the same training. But there are problems with this plan, both for the participant and for the sponsoring institution, and there is nothing systematic about either the programs that are available or the outcomes they produce. Equally important, many who today work in bioethics do not aspire to a full-time role in bioethics, or to a role that has research or teaching or both as a primary concern.
Students who are finishing up their undergraduate work and choosing graduate training--but who don't want to become physicians or lawyers--have some tough decisions to make. It is possible to take a degree in philosophy, sociology, law, medicine, nursing or any of several other disciplines and to take a second masters' degree in bioethics "on top." There are high quality masters programs in bioethics at several major universities. There are also many more programs emerging, including some at the schools currently recognized as Ph.D. or post-M.D. institutions of choice in bioethics. We have assembled a list of such programs.

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