Browsing by Subject "sosiaalietiikka"

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  • Pruuki, Heli (Helsingin yliopisto, 2007)
    Who is the patient? A social-ethical study of the Finnish practice of prenatal screening. The aim of this study is to examine the Finnish practice of prenatal screening from a social-ethical perspective. Analyzing ethical problems in medicine and medical practice only on a general scale may conceal relevant ethical dilemmas. Previous studies have suggested that many pregnant women view the prenatal screening practices customary in the Finnish maternal care system as intimidating and oppressive. This study analyzes the ethical questions of prenatal screening by focusing on the experiences and decision-making of a pregnant woman. Finnish women s experiences of and decision-making on the most common prenatal screening methods are reflected in the basic principles of biomedical ethics described by Tom L. Beauchamp and James F. Childress in Principles of Biomedical Ethics. To concretize women s experiences I refer to studies of Finnish women s experiences of prenatal screenings. This study shows that the principles of autonomy, non-maleficence and beneficence seem to materialize rather poorly in the Finnish practice of prenatal screening. The main ethical problem with prenatal screening is that the likelihood of a foetal cure is very limited and, upon detection of an affected foetus, the choice is usually whether to continue with the pregnancy or to undergo an abortion. Although informed consent should be required, women s participation in prenatal testing is, in many cases at least, not based on their active decision. Many women experience severe anxiety when they receive a positive screening result and must wait for the final results. Medical studies indicate that long- term anxiety may negatively influence the foetus and the mother-child relationship. This study shows that the practice of prenatal screening as such may cause more harm than benefit to many pregnant women and their foetuses. This study examines the decision-making process of a pregnant woman by using the theory of medical casuistry described in Jonsen, Siegler and Winslade s Clinical Ethics. This study focuses on each of the four points of view recommended by the theory. The main problem seems to be the question of whom the patient of prenatal screening is and whom the practice is intended to benefit: the mother, the foetus, the family or society? This study shows that the concepts of health in Finnish maternal care in general, and of the prenatal screening system in particular, differ considerably. It also demonstrates that the purpose and the aims of prenatal screening, aside from the woman s right to choose, has been expressed neither in Finnish public health programmes nor in the public recommendations of prenatal screening. This study suggests that the practice of prenatal screening is a statement, though unexpressed, of public health policy and as such comprises part of the policy of disability. This study further demonstrates that through a single explicit aim (the woman s right to choose) society actually evades its obligation to women by saddling pregnant women with the entire moral responsibility as well as the possible negative consequences of her choice, such as sorrow, regrets and moral balancing. The study reveals several ethical problems in the Finnish practice of prenatal screening. Such problems should be dealt with as the Finnish practice of prenatal screening advances.
  • Nikula, Karoliina (Helsingin yliopisto, 2015)
    Keywords: goodness, capability, choice, ethics, deaf, sign language, cochlear implant, clinical practice, medicalization. Lapsen hyvää edistämässä. Syntymäkuurojen lasten sisäkorvaistutehoitokäytännön sosiaalieettistä tarkastelua. [Promoting The Good of The Child. A Social-Ethical Analysis of Cochlear Implants in Children Born Deaf]. Karoliina Nikula, University of Helsinki. In 1995, after a long period of lobbying and political action, sign language was granted a legal status in Finland. In 1997, the first cochlear implant surgeries were performed on children in Finland. At present, 90 percent of deaf children undergo cochlear implant surgery. The use of sign language as a first language is diminishing. The majority of deaf children are born to hearing parents, and they are being asked to make the choice whether their children should receive cochlear implants or not. Previous empirical studies have shown that some parents feel that their choices are not always respected. The aim of this research project is to study cochlear implant clinical practices using the concepts of goodness, capability, and choice, as well as to analyse whether the shift in clinical practices from sign language to spoken language is based on careful deliberation and reasonable arguments. This study helps us to better understand the parents process of deciding whether or not to obtain cochlear implants for their children, and the family s journey through treatment options and standard clinical practices. In addition, this study provides tools for parents of deaf children to assist their decision-making and to medical practitioners who advise these parents. The study is focused around the following research questions: (1) What constitutes medical goodness for a child born deaf? (2) In what ways do cochlear implants and sign language promote a deaf child s capabilities? (3) Is it adequate to speak of choice when thinking about the dilemmas of parents of children born deaf? The research methodology is philosophical concept and argumentation analysis along with analysis of the construction of the concept of choice. The research data consists of various sources and literature. The sources can be divided into the following: 1) Avaintietokansio [materials made available to families of the deaf]; 2) publications of the Satakieli seminars; 3) brochures and other information provided by device manufacturers; 4) DVD and video recordings; 5) Internet pages; and 6) legislation. The literature is comprised of (1) previous empirical studies on the parents of deaf children obtaining treatment for their children. Empirical studies on family experience include materials published by the Finnish Association of the Deaf and the Institute for the Languages of Finland, e.g., Suomen viittomakielten kielipoliittinen ohjelma (2010); a publication of the Ombudsman for Children Hei, kato mua! (Johanna Kiili and Kirsi Pollari, eds., 2012); and Riia Celen s documentary Sanoja sormenpäissä (2009) and Minna Luukkainen s Viitotut elämät: Kuurojen nuorten aikuisten kokemuksia viittomakielisestä elämästä Suomessa (2008). These provide information on the experiences of families whose deaf children are being treated. Internationally, Stuart Blum s The Artificial Ear (2010) also provides information on the experiences of families. (2) Ethical and medical discourse on cochlear implants in deaf children. (3) Previous philosophical and ethical work, particularly the following: a) Martha Nussbaum s capability approach; b) Georg Henrik von Wright s The Varieties of Goodness (1963, Finnish translation 2001); and c) rational choice theory, especially in the work of Jon Elster. In addition, (4) methodological handbooks (e.g., literature about the conceptual tools) were used. The study is organized as follows. Chapter two examines deafness from two points of view: audiological and socio-cultural. I also introduce topics often associated with deafness, such as sign language and deaf culture. Here I also discuss the technical aspects of cochlear implants and provide a brief history of the deaf in Finland. In chapters 3 5 I examine the three main concepts goodness, capabilities, and choices with reference to the research questions. These provide essential conceptual tools when analysing the issue, as the processes connected to cochlear implants are centred around the question of what constitutes a good life for the child, the child s ability to develop, and the choices that parents in this situation must make. My research demonstrates the following: (1) The transition from sign language to spoken language is not based on sound arguments. This study did not find a solid rationale for reducing the use of sign language in order to rehabilitate hearing. Giving up sign language cannot be said to promote the child s good, capabilities, or opportunities to make independent choices in the future. On the contrary, it may indeed interfere with them. (2) In conjunction with the cochlear implant treatment process, it sometimes seems that the ideas of promoting choice and increasing capabilities are more of an illusion. We can also speak of language as an illusion in the sense that in the literature I surveyed (as well as in this discourse), language is often used synonymously with spoken language. The rhetoric used directs choice and creates impressions. We cannot speak of a family s autonomous, rational choices if the situation does not meet the criteria for choice. (3) Occasionally, the process seems to be about audism, i.e., valuing spoken language over signed language, medicalization, technological imperatives, and the treatment of cochlear implants as an ideological issue. All of these can have an effect on the decision-making processes of parents. (4) Cochlear implant clinical practices differ from general health care practices in the sense that implant practices are not always based on evidence (e.g., there is no evidence of the advantages of choosing not to learn sign language; there is as yet no knowledge of the long-term effects of cochlear implants). Furthermore, health care usually focuses only on areas within the medical field, but a language is not only a medical issue. Health care practices are usually based on research results, limited to areas in which medical authorities have competence and designed to maximize the patient s capabilities. (5) Legislation, different schools of thought, and treatment practices create different ways of understanding deafness. Legislation treats the deaf in terms of language and handicap. Different schools of thought lead to polarized discourse about deafness. Finally, according to the reports of parents, current clinical practices require them to choose one language for their child, although it would be possible to choose both sign language and spoken language. These divisions in the discourse may affect the decision-making of parents. (6) The idea of choice is not the best way to promote the well-being of deaf children. Focusing instead on capabilities would free parents and health care practitioners from the burden of predicting outcomes which will only come with time: that is, if all capabilities are promoted, it is not necessary to know how hearing or speech will develop, what the child would like to do or be when s/he grows up, or what sort of future the child will have. A discourse of choice creates an either/or, rather than a both/and situation. Both/and is a better platform from which to develop a child s full capabilities. (7) The concepts of goodness, capabilities, and choice provide useful tools to examine cochlear implant clinical practices and the dilemma of families with deaf children. These concepts can also be used more generally in thinking about ethical considerations in medical practice, as they represent fundamental issues in terms of both ethics and health care practice. (8) Cochlear implant clinical practices need to be developed. This study shows that written materials supporting parental decisions need to be improved, and care needs to be taken that space is given to different alternatives. In addition, more multi- and cross-disciplinary co-operation needs to be developed to improve the prospects for deaf children. Based on this study, I suggest that in the future we need to focus on four issues. First, we must pay attention to the rhetoric used in legislation, in information packets for families of the deaf, and in the research literature. Second, instead of talking about choice, we must take into consideration the child s strengths and skills on many levels. Third, we should consider the possibilities offered by multiculturalism, which includes different types of language choices, as well as multi- and cross-disciplinary clinical teams. If advice is being given on language, the treatment team should include a language specialist as well as a member who knows sign language. This study affirms the need for further multi- and cross-disciplinary co-operation. Fourth, deaf children should be treated as a whole person, not simply through their hearing or lack thereof.
  • Karppela, Lasse (Helsingin yliopisto, 2006)
    Science and the Scientist's Social Responsibility. Joseph Ben-David's, Roger Sperry's and Knut Erik Tranøy's Views of Science and the Scientist's Social Responsibility The aim of the study was to investigate, whether or not there is any connection between Jewish sociologist Joseph Ben-David's, American neuroscientist Roger Sperry's and Norwegian philosopher Knut Erik Tranøy's views of science and views of the scientist's social responsibility. The sources of information were their writings concerning this topic. Ben-David has a classical view of science. He thinks that the Mertonian norms of scientific activity, first written in 1942, are still valid in modern science. With the help of these norms Ben-David defends the view that science is morally neutral. Ben-David thinks that a scientist has a limited social responsibility. A scientist only reports on the new results, but he is not responsible for applying the results. In any case Ben-David's ideas are no longer valid. Sperry has a scientistic view of science. According to Sperry, science is the source of moral norms and also the best guide for moral action. The methods of natural sciences "show" how to solve moral problems. A scientist's personal views of science and social responsibility are not important. However Sperry's view is very problematic on the ethical side. Tranøy stresses the scientist's social responsibility. A scientist has common norms with the society from with he or she comes. This is why a scientist has the right, and also the responsibility, to discuss social and ethical questions between science and society. Tranøy's view has some ethical and practical problems, but it is valid in principle. Finally, Ben-David's, Sperry's and Tranøy's views of both science and the scientist's social responsibility have a connection: the view of science corresponds to the certain view of scientist's social responsibility. The result of this study is: Ben-David's, Sperry's and Tranøy's view of science have an ethical starting point as its fundamental presupposition, which include certain views of scientific knowledge, good and the scientist's ethical responsibilities. The connection between Ben-David's, Sperry's and Tranøy's views of science and views of the scientist's social responsibility means that their views of epistemology, meta-ethics and the scientist's ethical responsibilities have a connection to their views of the scientist's social responsibility. The results of this study can help the scientific community to organize the social responsibility of a scientist and deepen the conversation concerning the scientist's social responsibility.