By B. Zapotek. University of Northern Iowa. 2019.
The 50 interviewees Cystic Sickle Spina Down’s Conditions Thalassaemia Wbrosis cell biWda syndrome Interviewees 10 10 10 5 5 Men 5 2 6 1 4 W om e n Age range 26–39 17–30 21–33 18–33 20–43 Median age 33 24 29 26 30 Mainstream school 10 9 buy clomiphene 100 mg otc menopause baby. This worked very well discount clomiphene 50 mg with visa women's health center ada ok, as the previous discussion had helped to order and clarify their views discount 25mg clomiphene fast delivery menopause migraines, and the sheets gave them some editorial control over how we would use their views. In contrast to mainstream medical and psychological traditions, our ap- proach, methods and language yield diVerent and, we would argue, more realistic insights into the daily lives of people with serious congenital condi- tions. Among the people with Down’s syndrome, for example, one helped to run a youth club, one taught on courses about empowerment, assertion and safer sex for people with learning diYculties and was an artist, and two were actors who shared in creating plays about disability and genetics. Qualitative research such as this study cannot produce measurable, generalizable Wndings about the abilities and experiences of these Wve groups of people. Yet the study can challenge general assumptions, by showing how these interviewees did not Wt the negative images propounded in the prenatal medical literature. I was worried when he showed me into the family living room where his sister and girlfriend were already sitting, as I expected that their presence would inhibit him. I avoid the standard research practice of asking families to regroup to allow for a private interview, partly because their decisions and family dynamics are such useful data and partly because I would assert a potentially inhibiting power balance. During the interview he spoke about his shorter life expectancy, and when the young women objected he said that they always avoided the subject, but he wanted to talk about it with them. Like other interviewees he tried to make his employment record at least as good as that of his colleagues, to prevent his condition being used as an excuse to dismiss him. Like many of the interviewees, when asked about his hopes and aims, Tim spoke freely about being a partner and becoming a parent, spontaneously raising these issues and relieving me of the worry that I might upset or embarrass him by introducing them. Jane was delighted to return to work and to caring fully for her family after her recent heart transplant, but others were frustrated at not being able to Wnd suitable work. Having returned to live with her parents, she would ‘like to be able to do things more spontaneously, have more energy, spend less time with my parents and have more self-identity, be stronger and more conWdent’. Jenny said that she would love to be married and have children but felt that no one would want to take on the responsibility of caring for her and that she was not strong enough to have a child. It has stopped me from making plans and getting on with my life, like going to university or doing things which might be boring for a few years but lead on to something better’. Asked what he might want to change about himself, again like some of the others Rob replied, ‘I’m happy with my character, I’m very happy with what’s happening in my life at the moment’, and he was more keen to talk about how to change society. For example, one man with Down’s syndrome described being pushed and shoved in the street by his neighbours, and another was fed up with being Prenatal counselling and images of disability 205 treated by new work colleagues as if he were stupid, though he added, ‘They learn in the end, and then they realize that are the ones who look silly’. Their conditions did not appear to dominate their lives in most cases, and much time was spent talking about the many things they had in common with their ‘ordinary’ peers: work or unemployment, income, housing, relationships, leisure activities and ambitions. The other more disabled people with spina biWda included a young single mother who was also a college student, and Richard and Vivian who both used wheelchairs. He enjoyed going to city clubs with friends, and could haul himself in his chair up and down stairs, so he used underground trains despite oYcials trying to stop him. He said that when he joined mainstream secondary school, the wheelchair users were all taught mobility and coping with stairs and pave- ment kerbs, which helped him to become very Wt. You do feel low and in pain and angry with people and it is important to have friends and to go out for a drink’, and she talked enthusiastically about her many interests. Vivian was planning to have a baby and she talked of her mixed feelings about taking folic acid to reduce the risk of the baby having spina biWda, yet ‘being proud that I have spina biWda’ because it had given her such experience, knowledge and opportunities she would not otherwise have had. They also tended to say that they would respect any decision made by prospective parents after being properly informed, whether to continue or end a pregnancy aVected by their condition, though they hoped the pregnancy would continue and some had mixed feelings. For example, two men with Down’s syn- drome, who had been talking intently about their acting, suddenly looked very sad when asked about screening, and said they did not want to talk about it, as if the subject was too painful. However, the interviewees had far more similarities than diVerences, including the ways they reXected on their lives, and their belief that they suVered from the general stigma of disability more than from their actual condition. This raises questions about why the prenatal literature, policy makers and counsellors make so little mention of the potential range of each condi- tion from mild to severe, of the increasingly eVective treatments which Jenny mentioned, and of the possibility that some therapeutic abortions may prevent potentially rewarding lives. A further complication for prenatal predictions is the mismatch, shown particularly by the people with spina biWda, between the degree of severity of physical disability and the way people value and enjoy their lives. Prenatal counselling and images of disability 207 The implications of the interviews for prenatal counselling and maternal–fetal relations The overall impression given by the interviewees was of very interesting, thoughtful and pleasant people. Most of them appeared to value and enjoy their lives, sometimes despite pain and serious illness, as much as any average group of 40 young adults might say they do. One man with sickle cell anaemia was in such pain that his interview took place over three separate visits, but this was because he was so keen to take part. Their friends appeared to value them, and so did their families, with one exception as might be expected in any group of 40 adults (her mother had died and her father had remarried). Most interviewees had far more in common with their ‘ordinary’ peers than diVerences, and none showed any clear reason why their life would have been better prevented. Even allowing for the artiWcial nature of the research interview, and the way our methods partly shape the evidence, as is inevitable in every type of research, the interviewees provide compelling evidence for questioning the assumptions on which prenatal policies and counselling are based – that it is reasonable to prevent such lives. The interviewees challenge the view that it is kinder to terminate any aVected pregnancy, however mildly the fetus might be aVected, because life is so awful for the severest cases. Repeatedly, interviewees spoke of the crucial importance to them of being involved in mainstream society – schools and colleges, homes and jobs, clubs and pubs and friendships. They tended to stress their need to see beyond their condition as a personal predicament, and to press for greater inclusion by challenging negative attitudes in society, and by showing how they could be involved. They were grateful to parents who encouraged them to be strong and who, as one woman with Down’s syndrome said of her mother, were ready to ‘Wght for my rights [even through] the High Court, the High Court of Justice! Some of them helped to train medical students, and they criticized inaccurate medical images of disability, such as the sickly child advertisements that raise funds for medical research. Richard was referring to a theme that ran through the interviews – of adaptation, ingenuity and a resilience that grows through accepting and surmounting diYculties. This is in contrast to prenatal screening policies which propose eVorts to prevent and avoid diYculties, as if human beings cannot or should not have to experience them, and as if disability is not inevitable for most human beings, at least at the beginning and end of life. The interviewees quoted earlier suggest that this approach is unrealistic, because ordinary people’s lives so often involve problems – such as with relationships, loss, frustrating limitations or poverty. Fearful avoidance of disability, rather than promoting ways to support disabled people’s lives, is liable to diminish people rather than freeing them into new achievement and conWdence. The diYculty in these criteria is the current limitations in predicting how severe an impairment might be or might become, how much it may be ameliorated by social or medical support, and how the aVected person and family may experience similar diYculties either as hardship and suVering or as part of a worthwhile rewarding life. Some parents value their Prenatal counselling and images of disability 209 child’s very short life far more than no life at all (Delight and Goodall, 1990). Unawareness may include unawareness of suVering, which would obviate the criterion of suVering, and uncertainty again prevails over the diagnosis and prognosis of unawareness. Children who have been dismissed as ‘vegetables’ are perceived by others to experience profound feelings, such as by the researcher who commented, ‘Cabbages do not cry’ (Oswin, 1971). The argument that prenatal selection is diVerent from ending such lives after birth, and aVects attitudes towards impaired fetuses only, is unconvincing. The interviewees show that some disabled people feel threatened and disad- vantaged by the prejudices which are, perhaps inadvertently, promoted through prenatal screening.
This is because the smooth running of society depends on assuming that people deal honestly with each other; hence ‘truthfulness is a duty that must be regarded as the basis of all duties founded on contract discount 100 mg clomiphene with mastercard menstruation related disorders, and the laws of such duties would be rendered uncertain and useless if even the slightest exception to them were admitted’ (Kant buy generic clomiphene online women's health issues in canada, 1994: p purchase genuine clomiphene on line women's health edmonton. The second premise according to which Kant rejects lying is his dictum, connected to the Categorical Imperative, that one must ‘act in such a way that you always treat humanity, whether in your own person or in the person of any other, never simply as a means but always at the same time as an end’ (Kant, 1991: p. This is a call to be a respecter of persons, which means granting other persons the conditions for them to be full moral agents, thereby facilitating their free autonomous moral action. Therefore, lying cannot be justiWed even for the most altruistic of reasons, as lying threatens the autonomy of moral agents by reducing their capacity to make rational and so autonomous decisions (see Kant, 1994). Keeping the truth from a person creates a power imbalance which results in the ‘lied-to’ not achieving his or her full status as a moral agent, as a possessor of freedom and reason qua person. However, most people would consider Kant’s position extreme, and there are few (both inside and outside philosophy) who would argue that it is wrong to lie to a murderer about the location of his or her victim. Even those who hold universalizability to be an The ethics of secrecy in donor insemination 177 important premise in determining morally correct actions would like to make commonly agreed exceptions which could be universalizable, and so consistent, with the Categorical Imperative and the general promotion of truthfulness. For example, with regard to lying to a murderer, the claim would be that it would not be wrong to lie, because this could be turned into a Categorical Imperative, namely, that it is always one’s duty to lie to a murderer about the location of his or her intended victim. Therefore, in order to justify lying one has to adopt a non-Kantian position, and most likely a non-deontological position, from which one can claim that lies are justiWed if the consequences are beneWcial. From such a standpoint, ‘paternalistic lies’ are justiWed on two grounds: Wrst, that of protection; and second, because they are in the best interests of those lied to. Therefore, arguments from best interests and implied consent are Xawed, leaving a basic consequentialist argument, namely, that the consequences of producing a ‘normal’ family 178 H. Such a position is again questionable as it can be framed as setting the interests of the child against the interests of the family, resulting in a conXict of interests. One might want to add that for England and Wales, at least, the Children Act 1989 stipulates that the best interests of the child always come Wrst in any decision regarding his or her upbringing (the ‘welfare principle’ in s. There is no case law on whether best interests include knowing one’s parentage, but the Act does make it plain that in a case of conXict of interests with the parents, the child’s welfare comes Wrst. In sum, then, even if one adopts a consequentialist position and concludes that lying is not intrinsically negative, conXicts of interest still remain, and these are compounded by disagreements about what the desirable conse- quences are. Those who wish to maintain anonymity wish for the culture of secrecy to continue and for donors to remain completely separate from the parents and the resulting child. Hence, for the present it seems that parents will continue to decide whether or not to tell their children, and will judge for themselves whether or not maintaining such a secret will adversely aVect their families. However, if decisions about disclosure are going to be left up to parents it could be argued that all parents should be allowed to choose an identiWable donor. Conversely, parents who wish for total secrecy may wish to choose an anonymous donor, and arguably, if the choice really is to be up to the parents, this option should be available. By making such changes in legislation, the lawmakers are suggesting that one course of practice is preferable; in this case, that openness is better than secrecy. Indeed, what has informed the changes in the laws of certain countries is the belief that it is important for donor-oVspring to have access to information concerning their genetic heritage. Such practical changes, which reveal genetic non-parentage, will force openness, whether or not parents wish it and whether or not psychologists, doctors and philos- ophers think it is beneWcial. Thus, they are treated as separate issues, and often added as a footnote or afterthought when an evaluation of a health technology has already been made. Fetal screening is loaded with ethical and social consequences and determinants, such as views on reproduction, fetal rights, the value of disabled people, eugenic ideology, resource allocation and the structures of prenatal care. Thus, the importance of ethics and social factors may actually be easier to illustrate for fetal screening than for some other perinatal technologies – or for medical technologies in general. By ‘social’ I mean consequences and aspects concerning people other than the person who is the target of a technology, as well as social structures, including health care. By ‘screening’, as opposed to ‘testing’, I mean doing a test on a general pregnant population or a segment of it deWned by an unspeciWc risk factor, such as mother’s age. I will not discuss genetic or other types of testing done because of family history or other strong risk factors, or because of a screening Wnding that requires conWrmation. By the term ‘perinatal technologies’ I mean technologies used to create human life, regulate it and improve the health of the fetus, the newborn and his or her mother. Now the times of solely natural creation of new human life are past, and new life can be created (or assisted), and the quality of a new human being inXuenced. The knowledge of the existence of such screening may inXuence women’s and men’s images of their worthiness to have children because of their genetic makeup or other characteristics. Fetal screening will also aVect the view of pregnancy as being unreal until the quality of the fetus is guaranteed (‘tentative pregnancy’ as formulated by Rothman, 1987) and attachment to the fetus may be weakened. Although it may not aVect existing children with disabilities, this value judgement may in the long run create a more negative view about people with disabilities. Ethical and social aspects of evaluating fetal screening 185 worry about one’s worthiness nature of reproduction fetus position Existence attachment to the fetus views of disabled people veiws on reproduction eugenics worry Doing the test attachment to the fetus physical harm worry relationship with child False positives subsequent children diagnostics adverse effects False negatives disappointment relationship with child disability abortion attitudes True positives no abortion guilt responsibility health other services Resources costs place of care personnel structure Figure 12. Hemminki positives are false positives) and because the diagnosis, usually by amniocent- esis, takes weeks, there is a great deal of well-documented stress for the pregnant woman and her partner (Santalahti et al. This worry may make the couple’s lives miserable and may negatively aVect the pregnancy experience, with ongoing ramiWcations for family relationships and subse- quent pregnancies. False negatives (when the fetus has the condition but it is not detected by the screening test) may lead to disappointment – the mother/parents falsely assume the child to be normal, and they may be totally unprepared at the birth. In the case of true positives (when the condition is deWnitely conWrmed from the screening test or in a diagnostic test) the option of termination, often at late gestation, has to be faced. Because screening tests may require special skills and technology, they may have a notable impact on the place of antenatal care and type of personnel needed (Hemminki et al. Measuring of maternal blood pressure and weight, and doing various laboratory tests with the aim of identifying deviations or pathological Wndings are core elements. It is true that abortion is not the sole purpose of fetal screening, as knowledge of a handicapped fetus may be important in planning for delivery and newborn care. Other special features diVerentiating fetal screening from other antenatal Ethical and social aspects of evaluating fetal screening 187 screening include its target, the involvement of other people and its relation to eugenic ideology. Fetal screening has an impact not only on the mother and her fetus, but also on the father and siblings of the child, especially in cases of genetic screening. On a societal level this question may bother handicapped people in general – if the birth of people like themselves is not wanted, they may think that they are not wanted either. The fourth special feature of fetal screening, diVerentiating it from other antenatal screening procedures, is its possible relation to eugenic ideology. Eugenics was prominent in the western world early in the twentieth century, but is a source of shame today because of its connection to fascist politics and nationalistic and racist movements (Hemminki et al. Before the technology for fetal screening was available, the reproduction of people assumed to have unwanted hereditary characteristics was regulated either through isolation in institutions, marriage prohibitions, sterilizations and other pregnancy prevention methods, or through unselective abortions if an aVected woman got pregnant. A Wfth of the physicians agreed that it was so, in whole or in part; about half said it was not; and most of the other respondents either could not say or chose the option, ‘I do not know what eugenics is and cannot make a comparison’ (Hemminki et al. Those physicians who agreed that fetal screening was not linked to eugenics based their opinion on the intention and voluntariness of screening, focusing on improvement of a race versus de- creasing suVering among individuals. Fetal screening is based on certain values and beliefs, such as the import- ance of health, the feeling that a handicapped child is worse than none at all (particularly if there is an option of having a chance to try again) and the perception that handicaps cause suVering to the child itself, the parents 188 E.
The presence of symptoms after 5 years in veterans of the Falklands War was associated with the intensity of combat experience as well as retrospective reporting of emotional problems in the initial period on return home from the war buy cheap clomiphene 100mg menstruation frequency. If a later stressor activates the non-integrated material an emotionally painful flashback occurs which is imperfectly repressed buy clomiphene 25mg on-line menstruation red tent. Significant psychiatric symptoms (see box) were found in ‘Ground Zero’ (‘9/11’) ironworkers (Katz ea buy clomiphene 25mg with amex pregnancy 0-3 months, 2009); risk factors included alcohol misuse, injury to or death of a family member/friend/co-worker at Ground Zero, and at least one adverse life event subsequent to September 11, 2001. Although subject to methodological problems, the research of Claassen ea (2010) suggest that the suicide rates fell in areas surrounding the World Trade Center after 9/11. For example, pre-disaster symptomatology was the strongest predictor of post-diaster symptom severity in one study of Californian university students before and after an earthquake. Birmes ea, 2003) whereas loss of consciousness after a noxious event has been reported by some, but not all, researchers as being protective against developing the syndrome. There is numbing of responsiveness to, or reduced involvement in, the external world, and a variety of autonomic, dysphoric, or cognitive symptoms. The authors interpret the results as suggesting that the ‘strategic response to limit extreme arousal’ role of dissociation operates only when the person consciously processes threat, i. Low cortisol in patients were more likely if controls were not exposed to trauma, if the patients were female, if there was a history of physical or sexual abuse, or if the samples were taken in the afternoon. This difference may have been due to the different receptions received on returning home. Effective psychotherapy is not associated with return of hippocampal volumes to normal. The latter findings may relate to the role of the amygdala in emotional memory and, in the case of Broca’s area, a problem in labelling experience. Changes in acetylcholinesterase metabolism may persist for long periods after a single stressful event. In mice exposed to stress there is a change in the production of the commonly prevalent synaptic membrane- bound form of the enzyme to a normally rare soluble form, which may compromise capacity to cope with intensified cholinergic stimuli. Stressed in vitro mouse hippocampal neurones demonstrate very strong responses to electrical stimulation in the presence of physostigmine. Also, the muscarinic antagonist atropine blocks the response in post-stress neurones more effectively than in controls. There is also evidence for involvement of glutamine in these oversensitive synapses. The Mississippi Scale for Combat-Related Post-Traumatic Stress Disorder Self-report inventory measuring symptom severity and effects on coping Combat Exposure Scale Subjective measure of wartime stressors, light stress scoring 1, heavy combat exposure scoring 5 The Structured Interview for Posttraumatic Stress Disorder Questions asked of patient; delivers a score; event is defined, e. Bereavement was associated with grief and depression, whereas non-bereaved passengers were anxious. The most frequently reported symptoms in this cohort were those related to common mental disorders (19. Spouses of soldiers deployed to foreign combat zones are at increased risk of depression, sleep problems, anxiety, acute stress reactions and adjustment disorders. The core symptoms are anxiety (threat) or depression (loss), 1705 experienced singly or together. Cases should be seen early, mutual support groups are important, and emphasis in therapy should be on the here and now. Very 1706 severe cases may experience intense fear, hyperarousal, and ‘hysterical’ symptoms. Support, rest and reassurance are essential, any deeper evaluative approach being deferred. Previous experience and personality, as well as the precipitating event may help in understanding the reaction and intellectual disability is an important predisposing factor. In practice, attributing weight and an aetiological link to the stressor is often easier said than done. Reluctance to discuss symptoms and a refusal to attend a psychiatric clinic were common. A good prognosis is associated with good premorbid functioning, few premorbid schizoid traits, severe precipitating stress, acute onset, affective symptoms, confusion and perplexity, little blunting of affect, short duration, and no family history for schizophrenia. It lasts at least 2 years, and manifests decades after a devastating stressful experience that would affect anyone adversely, e. The clinical features include hostility, mistrust, social withdrawal, feelings of emptiness and hopelessness, feeling threatened and estranged. Other specific phobias include panic disorder with agoraphobia (fear of having a panic attack) and social 1708 phobia (fear of being judged by others and/or embarrassing oneself in public ) Schizophrenic or other psychoses (delusion-based avoidance) and obsessive-compulsive disorder (avoidance of, e. However, psychological debriefing and brief counselling of British soldiers who handled dead bodies during the Gulf War did not affect subsequent psychiatric morbidity. Thomas ea, (2006) in a systematic review, found that deployment in the Gulf was strongly associated with chronic fatigue syndrome and, to a lesser extent, with multiple chemical sensitivity or chronic multi-symptom illness. Iversen ea (2008) suggest that the psychological impact of deployment might be lessened by factors such as good unit morale, leadership, and preparation of soldiers for their role in war theatre. Image habituation training involves the patient listening to his audiotaped description of a traumatic event. How much damage to other memories would follow such controversial interventions is unknown. Amygdala and ventral anterior cingulate activation predicted treatment response to cognitive behaviour therapy. According to Bowman,(1999) evidence from a number of studies suggests that an approach aimed at solving problems may be superior to one based on emotional display. Nazi Germany, Guantanamo Bay) and still are involved in what amounts to torture in some parts of the world (genital mutilation, testing for homosexual activity or virginity, and withholding treatments for ‘self-induced’ problems). The aetiology of phobias are most likely complex and different factors may weigh differently in their contribution to individual cases. Put another way, the phobic situation is a symbolic representation of an inner conflict that the sufferer wants to avoid, the anxiety being displaced from the conflict onto a more readily available external object or situation. Other possibilities are the observation of others showing fear in the presence of an object or situation or being informed that such things should provoke fear by the media. Rachman (1977) suggested three pathways to fear acquisition: direct classical conditioning, vicarious conditioning (seeing others show fear), and information/instruction (being told fear-inducing stories). Early during the twentieth century, Watson and Rayner(1920) induced animal phobia in a boy using classical conditioning. Genetic input into specific phobia appears to work mainly via temperamental inhibition (shyness). In practice, whilst some people relate experiencing an unpleasant event to which they attribute their phobia, this is by no means universally true. Modelling involves the therapist in demonstrating the lack of real danger in performing some act. Blood- injection-injury phobia (Page, 1994) encompasses a wider array of fears than needle phobia: injections, mutilation, medical equipment, etc.