Limits to the scope of non-invasive prenatal testing (NIPT): an analysis of the international ethical framework for prenatal screening and an interview study with Dutch professionals.

BACKGROUND: The introduction of non-invasive prenatal testing (NIPT) for foetal aneuploidies is currently changing the field of prenatal screening in many countries. As it is non-invasive, safe and accurate, this technique allows for a broad implementation of first-trimester prenatal screening, which raises ethical issues, related, for instance, to informed choice and adverse societal consequences. This article offers an account of a leading international ethical framework for prenatal screening, examines how this framework is used by professionals working in the field of NIPT, and presents ethical guidance for the expansion of the scope of prenatal screening in practice. METHODS: A comparative analysis of authoritative documents is combined with 15 semi-structured interviews with professionals in the field of prenatal screening in the Netherlands. Data were recorded, transcribed verbatim and analysed using thematic analysis. RESULTS: The current ethical framework consists of four pillars: the aim of screening, the proportionality of the test, justice, and societal aspects. Respondents recognised and supported this framework in practice, but expressed some concerns. Professionals felt that pregnant women do not always make informed choices, while this is seen as central to reproductive autonomy (the aim of screening), and that pre-test counselling practices stand in need of improvement. Respondents believed that the benefits of NIPT, and of an expansion of its scope, outweigh the harms (proportionality), which are thought to be acceptable. They felt that the out-of-pocket financial contribution currently required by pregnant women constitutes a barrier to access to NIPT, which disproportionally affects those of a lower socioeconomic status (justice). Finally, professionals recognised but did not share concerns about a rising pressure to test or discrimination of disabled persons (societal aspects). CONCLUSIONS: Four types of limits to the scope of NIPT are proposed: NIPT should generate only test outcomes that are relevant to reproductive decision-making, informed choice should be (made) possible through adequate pre-test counselling, the rights of future children should be respected, and equal access should be guaranteed. Although the focus of the interview study is on the Dutch healthcare setting, insights and conclusions can be applied internationally and to other healthcare systems.

Responsibility in the age of Developmental Origins of Health and Disease (DOHaD) and epigenetics.

Insights from the Developmental Origins of Health and Disease paradigm and epigenetics are elucidating the biological pathways through which social and environmental signals affect human health. These insights prompt a serious debate about how the structure of society affects health and what the responsibility of society is to counteract health inequalities. Unfortunately, oversimplified interpretations of insights from Developmental Origins of Health and Disease and epigenetics may be (mis)used to focus on the importance of individual responsibility for health rather than the social responsibility for health. In order to advance the debate on responsibility for health, we present an ethical framework to determine the social responsibility to counteract health inequalities. This is particularly important in a time where individual responsibility often justifies a passive response from policymakers.

Ethics and prevention of overweight and obesity: an inventory.

Efforts to counter the rise in overweight and obesity, such as taxes on certain foods and beverages, limits to commercial advertising, a ban on chocolate drink at schools or compulsory physical exercise for obese employees, sometimes raise questions about what is considered ethically acceptable. There are obvious ethical incentives to these initiatives, such as improving individual and public health, enabling informed choice and diminishing societal costs. Whereas we consider these positive arguments to put considerable effort in the prevention of overweight indisputable, we focus on potential ethical objections against such an effort. Our intention is to structure the ethical issues that may occur in programmes to prevent overweight and/or obesity in order to encourage further debate. We selected 60 recently reported interventions or policy proposals targeting overweight or obesity and systematically evaluated their ethically relevant aspects. Our evaluation was completed by discussing them in two expert meetings. We found that currently proposed interventions or policies to prevent overweight or obesity may (next to the benefits they strive for) include the following potentially problematic aspects: effects on physical health are uncertain or unfavourable; there are negative psychosocial consequences including uncertainty, fears and concerns, blaming and stigmatization and unjust discrimination; inequalities are aggravated; inadequate information is distributed; the social and cultural value of eating is disregarded; people's privacy is disrespected; the complexity of responsibilities regarding overweight is disregarded; and interventions infringe upon personal freedom regarding lifestyle choices and raising children, regarding freedom of private enterprise or regarding policy choices by schools and other organizations. The obvious ethical incentives to combat the overweight epidemic do not necessarily override the potential ethical constraints, and further debate is needed. An ethical framework to support decision makers in balancing potential ethical problems against the need to do something would be helpful. Developing programmes that are sound from an ethical point of view is not only valuable from a moral perspective, but may also contribute to preventing overweight and obesity, as societal objections to a programme may hamper its effectiveness.

Should euthanasia be legal? An international survey of neonatal intensive care units staff.

OBJECTIVE: To present the views of a representative sample of neonatal doctors and nurses in 10 European countries on the moral acceptability of active euthanasia and its legal regulation. DESIGN: A total of 142 neonatal intensive care units were recruited by census (in the Netherlands, Sweden, Hungary, and the Baltic countries) or random sampling (in France, Germany, Italy, Spain, and the United Kingdom); 1391 doctors and 3410 nurses completed an anonymous questionnaire (response rates 89% and 86% respectively). MAIN OUTCOME MEASURE: The staff opinion that the law in their country should be changed to allow active euthanasia "more than now". RESULTS: Active euthanasia appeared to be both acceptable and practiced in the Netherlands, France, and to a lesser extent Lithuania, and less acceptable in Sweden, Hungary, Italy, and Spain. More then half (53%) of the doctors in the Netherlands, but only a quarter (24%) in France felt that the law should be changed to allow active euthanasia "more than now". For 40% of French doctors, end of life issues should not be regulated by law. Being male, regular involvement in research, less than six years professional experience, and having ever participated in a decision of active euthanasia were positively associated with an opinion favouring relaxation of legal constraints. Having had children, religiousness, and believing in the absolute value of human life showed a negative association. Nurses were slightly more likely to consider active euthanasia acceptable in selected circumstances, and to feel that the law should be changed to allow it more than now. CONCLUSIONS: Opinions of health professionals vary widely between countries, and, even where neonatal euthanasia is already practiced, do not uniformly support its legalisation.

Child development and quality of parenting in lesbian families: no psychosocial indications for a-priori withholding of infertility treatment. A systematic review.

Among fertility centres, much discussion focuses on whether to withhold infertility treatment from special patient groups (lesbians, prospective single parent(s), prospective parent(s) of relatively advanced age, or with severe diseases) because it is assumed that this is in the best interest of the child. The present study aimed to establish whether there is any empirical evidence for this assumption. A literature search was made in PubMed/Medline and PsycINFO to identify studies that had assessed psychological outcomes of children and quality of parenting after infertility treatment. Eight studies met the following inclusion criteria: published in an English-language peer-reviewed journal between 1978 and 2002, and focused on psychosocial child development and quality of parenting after infertility treatment in the above-mentioned special patient groups. All reviewed studies focused on lesbian or single-parent families. Overall, the methodological quality of studies as assessed by a standardized set of criteria was high. The evidence of the studies (assessed by the best evidence synthesis method) was strong for the conclusion that in lesbian families the psychosocial development of children (median age 6.1 years) and the quality of parenting are not different from those in healthy heterosexual two-parent families after infertility treatment or natural conception. Therefore, withholding infertility treatment from lesbian families on the assumption that such intervention may not be in the interest of the prospective child seems unjustified. For the other special patient groups, no conclusions could be drawn, because of a lack of relevant studies.

[Cryopreservation of ovarian tissue open for discussion]. / Cryopreservatie van ovariumweefsel ter discussie.

In view of the promising developments in preclinical studies on the cryopreservation of human ovarian tissue offering this technology as a 'fertility insurance' to cancer patients can be justified. This commentary briefly discusses some of the ethical issues involved, including the doctors responsibility regarding the risk of the reintroduction of cancer, the pros and cons of both xenotransplantation and in vitro maturation, parental responsibility in consenting to fertility insurance for minors, and cryopreservation of ovarian tissue of younger, healthy women who wish to postpone fertility.

[HIV and reproductive choices]. / HIV en reproduktieve keuzen.

PIP: It is estimated that there are about 120-150 hemophilic men infected with HIV in the Netherlands as well as 1000 men infected via intravenous drug use. The majority of them are in reproductive age with relationships with seronegative women. In the event they want to have a child, artificial insemination with donor sperm (KID) is an option. In 1994 there were 147 instances of insemination of 66 women with the processed semen of HIV-positive men and no infection resulted. The annual risk of HIV infection was 7.2% of a woman engaging in unprotected intercourse, according to a prospective Italian study. The risk of HIV infection per contact was estimated at 0.1-5.6%. However, it is not yet proven that processed sperm of an HIV-seropositive man can produce a pregnancy without the risk of infecting the woman. The risk of transmission of HIV to the fetus is higher in artificial insemination of a seropositive woman with the sperm of her partner. In vitro fertilization is not a sure method either for the prevention of HIV infection of the mother because of the possibility of an egg cell being infected before fertilization. HIV-infected pregnant women face the problems of caring for HIV-infected offspring. For HIV discordant couples the advice is to use both condoms for the prevention of infection and oral contraceptives for the prevention of pregnancy. In the case of a lesbian relationship, if the partners want to have a child, HIV infection is still a factor because of previous heterosexual contacts.^ieng