The question of what counts as a successful outcome of the process of genetics counselling has recently become central because of the increasing calls for efficiency in health care, and for means of measuring efficiency. Angus Clarke has drawn attention to this trend, and has argued against both a measure in terms of the number of terminations of pregnancy performed as a result of counselling, and an assessment in terms of the contribution of genetics counselling to a national eugenics policy. (...) He suggests instead a measure of workload. There are good arguments for supporting Clarke's position up to a point. In looking for an appropriate measure, much turns on how genetics counselling is defined. It is here understood in the context of an autonomy model of health care. It is argued that there is a contradiction between such an interpretation and the termination measure of outcome. The political philosophy underlying this outcome is also defective. Workload is not sufficient as a measure of outcome however; it is essential to look at the proper goals of an activity. It is argued that these must be connected in some way with the genetic health of the population; that the promotion of reproductive autonomy itself is not sufficient as a goal. The concern for genetic health, however, is interpreted in a way that avoids Clarke's concerns about a national eugenics policy. (shrink)

We have a reason to use information which is available about such genes in our reproductive decision-making; (3) couples should selec.

The ArgumentA survey of 2901 genetics professionals in 36 nations suggests that eugenic thought underlies their perceptions of the goals of genetics and that directiveness in counseling after prenatal diagnosis leads to individual decisions based on pessimistically biaed information, especially in developing nations of Asia and Eastern Europe. The “non-directive counseling” found in English-speaking nations is an aberration from the rest of the world. Most geneticists, except in China, rejected government involvement in premarital testing or sterilization, but most also held (...) a pessimistic view of persons with genetic disabilities. Individual, but not state-coerced, eugenics survives in much modern genetic practice. (shrink)

Is it justified to detect minor genetic aberrations before birth and terminate pregnancies based upon such information? We present the case of a woman who wanted Prenatal Diagnosis to detect whether her female fetus was a Haemophilia mutation carrier. Such carriers are usually healthy.She wished to eradicate the Haemophilia mutation from her family to avoid future generations being affected and to protect her children from having to go through PND themselves. We explore existing practice guidelines, public attitudes and possible objections (...) to providing PND for minor abnormalities. We argue that in a society where couples have considerable autonomy relating to decisions about the fetus at least until viability, the routine restriction of PND for minor genetic abnormalities would be an unjust infringement of individual liberty. (shrink)

This essay examines the possible systematic bias against the disabled in the structure and practice of genetic counseling. Finding that the profession's “nondirective” imperative remains problematic, the authors recommend that methodology developed by feminist standpoint epistemology be used to incorporate the perspective of disabled individuals in genetic counselors' education and practice, thereby reforming society's view of the disabled and preventing possible negative effects of genetic counseling on the self-concept and material circumstance of disabled individuals.

This article is written in response to the idea that selective termination may be eugenic. It points out that a mixture of motives and goals may inform screening programmes and selective termination for fetal abnormality without the intention being “eugenic”. The paper locates modern genetics within the tradition of humanist medicine by suggesting that parents who choose to terminate a pregnancy because of fetal abnormalities are not making moral judgments about those who are living with these abnormalities already. Rather they (...) are making judgments about their own lives and the lives of their children in relation to this genetic disorder. It concludes by introducing several caveats about the counselling that parents receive after the results of the testing and suggests that counselling inevitably contains a directive element because of the nature of the information covered. (shrink)

Prohibition on sex selection may well be unnecessary and oppressive as well as posing risks to women’s lives The urge to select children’s sex is not new. The Babylonian Talmud, a Jewish text completed towards the end of the fifth century of the Christian era, advises couples on means to favour the birth of either a male or a female child.1 The development of amniocentesis alerted the public in the mid-1970s to the scientific potential for prenatal determination of fetal sex,2 (...) and progressive decriminalisation of abortion afforded choice about continuation of pregnancy. The more recent emergence of preimplantation genetic diagnosis (PGD) obviates resort to abortion, and improved techniques of sperm sorting and diagnosis permit creation of zygotes that will ensure the sex of a future child. Growth of biomedical means to select the sex of future children has been accompanied by fear that such means will be employed to favour births of sons, and so perpetuate devaluation of girl children and women’s inferior family and social status. A reaction to this fear has been the demand for legal and medical professional prohibition of sex selection techniques. For instance, the Council of Europe’s Convention on Human Rights and Biomedicine3 provides in article 14 that: The use of techniques of medically assisted procreation shall not be allowed for the purpose of choosing a future child’s sex, except where serious hereditary sex-related disease is to be avoided. Legislation has been enacted in a number of countries, and proposed in others, to prohibit sex selection on non-medical grounds, such as the Prenatal Diagnostic Techniques (Regulation and Prevention of Misuse) Act, 1994 in India. In Canada, for instance, government draft legislation introduced in May 2002 proposes to make it a crime for any person, for the purpose of creating a human …. (shrink)

Until recently, genetics counselors and medical geneticists considered themselves lucky if they could provide parents with predictive information about a small number of severe genetic disorders. Testing and counseling were indicated primarily for conditions of thithis s sort. Out of respect for the autonomy of parental reproductive decision making, the prevailing ethic of genetic counseling stressed nondirectiveness and value neutrality As summarized by Arthur Caplan, the hallmarks of this stance includea willingness to provide testing and counseling to all who voluntarily (...) seek it, the presentation of information concerning findings in a manner that is balanced and comprehensible to patients or clients, the fair and balanced presentation of all options for action if a problem is discovered, a willingness to answer all questions asked by those seeking services, and an obligation to protect privacy and confidentiality at all times regardless of societal needs or benefits. (shrink)

The attitudes of Australian practitioners working in clinical genetics and obstetrical ultrasound were surveyed on whether termination of pregnancy (TOP) should be available for conditions ranging from mild to severe fetal abnormality and for non-medical reasons.These were compared for terminations at 13 weeks and 24 weeks. It was found that some practitioners would not facilitate TOP at 24 weeks even for lethal or major abnormalities, fewer practitioners support TOP at 24 weeks compared with 13 weeks for any condition, and the (...) difference in attitudes to TOP between 13 weeks and 24 weeks is most marked for pregnancies which are normal or involve a mild disorder. It is argued that a fetal abnormality criterion for late TOP is inconsistently applied, discriminatory and eugenic. Four possible moral justifications for current practice are examined, each of which would require significant changes to current practice. I argue in favour of a maternal interests criterion for any TOP. (shrink)

One widely held view of prenatal screening is that its foremost aim is, or should be, to enable reproductive choice; this is the Pure Choice view. The article critiques this position by comparing it with an alternative: Public Health Pluralism. It is argued that there are good reasons to prefer the latter, including the following. Public Health Pluralism does not, as is often supposed, render PNS more vulnerable to eugenics-objections. The Pure Choice view, if followed through to its logical conclusions, (...) may have unpalatable implications, such as extending choice well beyond health screening. Any sensible version of Public Health Pluralism will be capable of taking on board the moral seriousness of abortion and will advocate, where practicable, alternative means of reducing the prevalence of disease and disability. Public Health Pluralism is at least as well-equipped as the Pure Choice model to deal with autonomy and consent issues. (shrink)

Preimplantation genetic diagnosis (PID) is often seen as an improvement upon prenatal testing. I argue that PID may exacerbate the eugenic features of prenatal testing and make possible an expanded form of free-market eugenics. The current practice of prenatal testing is eugenic in that its aim is to reduce the numbers of people with genetic disorders. Due to social pressures and eugenic attitudes held by clinical geneticists in most countries, it results in eugenic outcomes even though no state coercion is (...) involved. I argue that technological advances may soon make PID widely accessible. Because abortion is not involved, and multiple embryos are available, PID is radically more effective as a tool of genetic selection. It will also make possible selection on the basis of non-pathological characteristics, leading, potentially, to a full-blown free-market eugenics. For these reasons, I argue that PID should be strictly regulated. (shrink)

Clinical genetics encompasses a wider range of activities than discussion of reproductive risks and options. Hence, it is possible for a clinical geneticist to reduce suffering associated with genetic disease without aiming to reduce the birth incidence of such diseases. Simple cost-benefit analyses of genetic-screening programmes are unacceptable; more sophisticated analyses of this type have been devised but entail internal inconsistencies and do not seem to result in changed clinical practice. The secondary effects of screening programmes must be assessed before (...) they can be properly evaluated, including the inadvertent diagnosis of unsought conditions, and the wider social effects of the programmes on those with mental handicap. This has implications for the range of prenatal tests that should be made available. While autonomy must be fully respected, it cannot itself constitute a goal of clinical genetics. The evaluation of these services requires interdepartmental comparisons of workload, and quality judgements of clients and peers. (shrink)