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Hi everyone.. one more :) would love your help::confused:

 

What should the doctor do if a patient who became pregnant after years of trying to get pregnant- her tests revealed a defect in the fetus. The patient plans to continue the pregnancy, and asks not to say anything to her partner.

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I've got a better one:

 

Your patients are a married couple who are have achrondroplasia (i.e. have achondroplastic dwarfism). The wife is pregnant. She and her husband have had prenatal testing performed, and have learned that the fetus did NOT inherit the achondroplasia gene (i.e. the infant will NOT have achondroplastic dwarfism).

 

The couple plans to terminate this normal fetus because they want a baby "like ourselves".

 

What do you do / say?

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Under current law, is there anything you CAN say? Women are entitled to abort a "healthy" fetus for just about any reason that they see fit.

 

To my mind, that's something that should have been addressed before the testing was offered. You can explore with them their feelings and motivations, but if they are set on their decision, then there is nothing to be done.

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future_doc:

 

Do you mind analyzing it "bio-ethically?" I mean, how would you answer it in an interview?

 

Mourning Cloak and Ellorie:

Women are entitled to abort a "healthy" fetus for just about any reason that they see fit.

 

It doesn't sound to me like a legitimate reason to have an abortion... so cruel. I guess you can offer adoption to her but she might not agree... how would you answer this question in an interview? I am trying to learn how to analyze these type of questions in an interviewly way...:cool:

 

 

Thank you.

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Hi everyone.. one more :) would love your help::confused:

 

What should the doctor do if a patient who became pregnant after years of trying to get pregnant- her tests revealed a defect in the fetus. The patient plans to continue the pregnancy, and asks not to say anything to her partner.

 

For a discussion, see

http://canadianbioethicscompanion.ca/the-canadian-bioethics-companion/chapter-5-genetic-and-reproductive-control/

 

http://www.lifenews.com/2013/02/13/parents-reject-doctors-advice-to-abort-baby-with-birth-defects/

 

H:\Helen\Helen\HISTORY\Medical Articles\Bioethics for clinicians 7_ Truth telling -- Hebert et al_ 156 (2) 225 -- Canadian Medical Association Journal.mht

 

http://liveactionnews.org/parents-of-unborn-babies-with-disabilities-often-experience-great-pressure-to-abort/

 

http://www.google.com/url?sa=t&rct=j&q=&esrc=s&frm=1&source=web&cd=68&ved=0CGEQFjAHODw&url=http%3A%2F%2Fcourses.washington.edu%2Fintro2ds%2FReadings%2F25_Asch-bioethics.doc&ei=9xJ9Ueb1Obin4AOtt4GQDw&usg=AFQjCNGkzAAYsoItUPF-YF5CPnebzO-VjA&sig2=BjTsqsXo55MW9XEXeYVPUw

 

http://books.google.com/books?id=jTUq-89BNscC&pg=PA166&lpg=PA166&dq=bioethics+in+Canada+for+aborting+a+defective+fetus&source=bl&ots=9HnskWqqSx&sig=1ppNXmHNZgsPolmf6Gjgn2MdihI&hl=en&sa=X&ei=Ewh9Udj5E9LH4AOV34DADg&ved=0CFwQ6AEwBw

 

 

 

Disability, Bioethics,

and Human Rights

ADRIENNE ASCH

 

In 1989, Canadian philosopher Susan Wendell characterized the way bioethics literature discusses disability as follows: "Under what conditions is it morally permissible/right to kill/let die a disabled person and how potentially disabled does a fetus have to be before it is permissible/right to prevent its being born?" (p. 104). This statement aptly captures much of what bioethics has said about disability and fits the dominant view of bioethics held by those in disability studies and disability rights. Yet, despite serious problems in much of the bioethics literature for anyone with a minority group or social model of disability, the field of bioethics struggles with topics of profound importance to disability studies and to disability rights. Furthermore, some questions of bioethics pose an important challenge to both the social model and the minority group model of disability and compel people to reconsider the social, moral, and policy implications of forms of human variation..........

 

DESCRIBING BIOETHICS: CONVERGENCE AND CONTRAST WITH DISABILITY RIGHTS

 

What unites the field of bioethics is its concern with fundamental questions of health and illness, life and death, the relationship of medicine to nature, what constitutes a life of quality, and whether there are ever life situations that appear worse than not being alive. Bioethics shares some interesting and significant similarities with the international disability rights movement and the social/minority group models of disability models that I will generally discuss together because they overlap on many bioethical issues (see Shakespeare and Watson, this volume).' Both worldwide bioethics and the worldwide disability rights movement have become known only in the past half century, and each has emerged in reaction to a dominant paradigm in the medical and helping professions. Recognition of bioethical issues first arose when people learned that in World War II Germany and in the postwar United States, physicians and scientists had abused many classes of vulnerable citizens by failing to obtain their informed consent to serve as subjects in medical research. Prisoners, concentration camp inmates, African American sharecroppers, and residents of institutions for the psychiatrically and cognitively disabled all became victims of government and professional research interests. Discovery of these abuses spurred demands for regulation, reform, and new oversight of governmental and professional behavior (Annas and Grodin 1992; U.S. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research 1978).

The early U.S. independent living and disability rights movement exemplified much the same challenge to professional domination and demands for self determination and autonomy (Gaylin et al. 1978). Adults with disabilities and parent advocates for disabled children protested abuses by powerful government and philanthropic institutions that historically had usurped their decision making authority, using the same language as physicians, lawyers, philosophers, and theologians who questioned the power and paternalism of medicine in conducting medical research and using new life sustaining technologies. During the 1960s and 1970s, as the National Federation of the Blind demanded representation on boards of service agencies (Matson 1990) and as Ed Roberts and other students with disabilities challenged the paternalism of the University of California at Berkeley and created the first center for independent living, bioethics was questioning whether people who seemed near death should be sustained by technologies such as mechanical respiration or tube feeding. Even though medicine could save lives after traumatic injury or could maintain lives of people affected by cancer, stroke, and heart or kidney disease, should patients have the authority to refuse these treatments? If so, on what basis and for what reasons might it be morally acceptable and legally permissible to decline life saving technology for oneself? If individuals could challenge professional authority for themselves, could they do so on behalf of their minor children or demented parents? Was it ever appropriate for government or professionals to limit patient or family in the realm of medical decision making?'

 

Like the new paradigms in disability scholarship and activism that have moved from demands for individual control and self determination to calls for sweeping societal change, bioethics has recognized that the complex life and death decisions made by individuals and families cannot remain its only concern. Recent debate also focuses on questions about the implications of research on life creating or life changing technologies themselves, on questions of what constitutes a just distribution of social resources for medical care, and on which life situations should properly come under the purview of medicine. These and other bioethical issues appear regularly in the newspaper and on television, radio, in film, theater, and fiction. Should an experimental therapy for cancer be paid for by a health insurance plan? Should a health maintenance organization (HMO) refuse to cover any treatments for particular conditions, such as alcoholism, substance abuse, "gender identity disorder," depression, or infertility? When, if ever, is growth hormone therapy an appropriate treatment? Should society support research on human cloning, male pregnancy, gene modification, or extending the human life span than 100 years? Although some of these questions may ring of science fiction, others have already faced us. They all demonstrate that biology is not destiny and that we must grapple with what control we believe is appropriate to exert over our biological lives.

If Western bioethics resembles the disability rights movement in its commitments to patient autonomy, skepticism about professional power, and paternalism and championing of consumer protection, it has never accepted the claims of the movement and of recent disability scholarship in its assessment of the impact of impairment. Whether writing out of a religious or secular orientation, bioethics has tended to cast discussions about life-and-death questions in terms of contrasts between what might be called the "sanctity-of-life" and the "quality-of-life" approaches. Until the advent of means to save premature babies, young people injured in wartime or car accidents, and elderly people who had heart attacks or strokes, societies had not needed to consider whether life in such impaired conditions should be maintained. The dominant bioethics voices have argued that human life had to be respected and valued but not necessarily at any cost or in any state of impairment. Now that human mastery over nature permitted lives to be saved and sustained despite significant illnesses and disabilities, it was incumbent on individuals and societies to determine the limits to which medicine and technology should be used for these purposes. Instead of the medical question, "Can this life be saved?" bioethics invites the question, "Should this life be saved?" Medicine could now decrease mortality but only by increasing the numbers of people of all ages who would live with chronic illnesses or disabling conditions. Bioethicists have taken on the mission of supporting those who believed that the quality of the life after treatment should be a factor in medical decision making and in decision making about allocations of resources (Morreim 1995; Walter 1995). Bioethics asks the disability community the following: Is it appropriate to use technology and skill to sustain the life of someone who would have a disability?

 

There is not one disability response any more than there is only one bioethics response; nonetheless, the dominant message of disability studies and disability activism disputes the statements permeating most of bioethics. Bioethics writing, like the medical model of disability now being replaced by a social model, has failed to question traditional understandings of impairment, illness, or disability. In arguing that individuals should not be required to submit to unpleasant medical interventions simply because such technologies had been developed, bioethics was trying to wrest control from what it perceived to be a technology-happy medical establishment and return decisional authority to individuals. As represented in major works (Beauchamp and Childress 1994; President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research 1982, 1983; Reich 1995), bioethics insists that individuals should be able to determine the situations under which they find life intolerable but has never challenged them to ask themselves what they found intolerable. Nor has bioethics suggested that what was unacceptable might not be inherent in quadriplegia, stroke, or a degenerative neurological disorder but instead could result from the social arrangements facing people living with such conditions. Although bioethics has been the means of challenging unbridled uses of technology and of calling for protections for participants in medical research, most bioethics literature has never contested prevailing notions of what it means to have an illness or impairment or to be a person with a disability_ Rather, bioethics has presumed impaired mobility, physical deformity, sensory deficit, atypical learning style or speed, or departures from what was customary in energy, stamina, or flexibility to be the reason why people with disabilities would be less educated, less likely to be working, often in poverty, and more socially isolated than people who did not have impairments. When it concerns life with disability, most people who call themselves bioethicists have viewed having a disability from within what Gliedman and Roth (1980) and Bickenbach (1993) term the medical or biomedical model, as contrasted with a minority group (Gliedman and Roth 1980; Hahn 1983) or social model (see Shakespeare and Watson, this volume) of disability. Disability community critics of standard bioethics reject the medical model of disability, with its belief that functional impairment leads to an unacceptable, unsatisfying life. The critics do not demand to use theological or "sanctity-of-life" values; they claim that even on "quality-of-life" measures, a life with disability can be rewarding.

 

HEALTH, NORMALITY, DISABILITY, AND QUALITY OF LIFE

 

Defining terms such as health, normality, impairment, and disability continues to pose problems and cause controversy for bioethics and for disability studies_ Their meanings are not clear, objective, and universal across time and place and are contentious even for contemporaries in the same culture, profession, and field. A look at the controversy within bioethics and the policy about which variations from the typical or average are impairments, which behaviors should be considered health problems, and which should be viewed as social or moral problems will reveal how difficult it is to come up with a clear and widely shared understanding. The bioethics literature contains extensive discussions about how to define health. For people such as Christopher Boorse (1987), a person is said to be healthy if the person's organism performs species-typical functions with statistically typical efficiency. Matters for debate within bioethics include whether health should be defined as the absence of disease (Boorse 1987) or as a state of well-being, as the World Health Organization proposed (Purdy 1996); whether the well-being in question includes mental and social well-being in addition to physical well-being; and whether disease can be defined neutrally or only with reference to a culture and a historical period. (Compare Boorse 1987 with Caplan, Engelhardt, and McCartney 1981; Engelhardt and Wildes 1995; Purdy 1996 for arguments about the importance of cultural and historical location in ascribing impairment; see Wasserman, this volume, for detailed discussion of this entire topic.) Virtually everyone engaged in the debate over a definition of health or impairment is convinced that individual physical, cognitive, and emotional characteristics are evaluated with reference to what is expected or desired by way of functioning and role performance for a girl or boy, woman or man. Operating within the medical framework and the worldview of bioethics, health is prized because "impairments of normal species functioning reduce the range of opportunity open to the individual ...[to] construct [a] `plan of life' or `conception of the good' " (Daniels 1985:27). Congenital disability, chronic illness, traumatic injury, malnutrition, and the aging process occasion departures from "species-typical functioning" and constitute differences from both a statistical average and a desired norm of well-being, although such departures are reported to affect one-sixth to one-fourth of the world's population.

 

Those who embrace either the social or the minority group model of disability contend that medically oriented understandings of impairment contain two erroneous assumptions. First, the life of someone with a chronic illness or disability (used interchangeably throughout this article) is forever disrupted, as one's life can be temporarily disrupted by the flu or a back spasm. Second, if a disabled person experiences isolation, powerlessness, poverty, unemployment, or low social status, these are inevitable consequences of biological limitation. Bioethics generalizes from the problems and disorientation that some people may experience at the onset of a disability and assumes that such disruption is unchanged by rehabilitation, adaptation, mastery of new means to accomplish desired ends, or changes in the life plans one pursues. Bioethics also fails to recognize the extent to which disadvantages experienced by people with disabilities arise through society's lack of accommodation to the different methods of performing valued activities such as learning, communicating, moving, or taking in the world. On the contrary, say disability studies scholars and disability politics. First, life with disability is not the unremitting tragedy portrayed in medical and bioethics literature. Second, the culprit is not biological, psychic, or cognitive equipment but the social, institutional, and physical world in which people with impairments must function-a world designed with the characteristics and needs of the nondisabled majority in mind. An impaired arm becomes a manual disability or social handicap only because of the interaction of a particular physiology with a specific social, legal, and attitudinal environment.

 

In the minority group or social models of disability, rules, laws, means of communication, characteristics of buildings and transit systems, the typical eight-hour workday, and aesthetic preferences all exclude some people from participating in school, work, civic, or social life. When medicine and bioethics discuss the importance of health care, urge accident prevention, and promote healthy lifestyles, these professions perceive that a certain level of health and functioning serves as a prerequisite for the "normal opportunity range" or for an acceptable life (Daniels 1985). According to the more recent thinking, by contrast, disability is a fact of human life, and thus everyone gains if societies refashion the social and physical world to ensure the comfortable participation of all people with their diverse range of capacities. While desirable, health and medical care do not hold the keys to "the normal opportunity range" or to a satisfying life.

 

For the past three decades, scholars and activists in disability have argued that the problem of disability was, indeed, one of denial of civil, social, and economic rights and not one of biology and health. Yet, the attitudes toward disability and the assumptions about the impact disabled people have on families and society that abound in medicine and bioethics all compel those scholars and activists to assert that the first right of people with disabilities is a claim to life itself, along with the social recognition of the value and validity of the life of someone with a disability (D. Wasserman, personal communication, 2000).

 

 

............................

 

 

 

Without taking a position and being entirely neutral, you can discuss the pros and cons of her advising her partner of the issues involved and letting him give his imput and support to the decision, as she wants his assistance in raising the child as a loving, supportive father. You assure her that you will not breach confidentiality, letting her know that just as you ethically have a duty to inform her, she has a duty toward her partner. You may suggest that they both go for genetic counselling and to a support group that can give them context and support for their decision.

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I would say that this woman's right to autonomy and current Canadian law gives her the right to have an abortion for any reason that she sees fit. I don't think that it is my place to determine what is a "legitimate" abortion and what is not. I also think that it's a relatively normal desire to have a child who looks like you. It's not necessarily a choice that I would make - but then, I have never been in that situation, so I cannot say with confidence how I would feel.

 

I would explore the couple's ideas about abortion and try to understand their thoughts and make sure that they are aware of all their options and have thought the decision through. But it's also their choice to make and in the end I would have to respect it.

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I liked the most the answer:

Without taking a position and being entirely neutral, you can discuss the pros and cons of her advising her partner of the issues involved and letting him give his imput and support to the decision, as she wants his assistance in raising the child as a loving, supportive father. You assure her that you will not breach confidentiality, letting her know that just as you ethically have a duty to inform her, she has a duty toward her partner. You may suggest that they both go for genetic counselling and to a support group that can give them context and support for their decision.

 

 

 

Thank you!

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