Access to Pregnancy-Related Services: Public Health Ethics Issues (original) (raw)
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Genes, 2021
New technologies such as non-invasive prenatal testing (NIPT), capable of analyzing cell-free fetal DNA in the maternal bloodstream, have become increasingly widespread and available, which has in turn led to ethical and policy challenges that need addressing. NIPT is not yet a diagnostic tool, but can still provide information about fetal genetic characteristics (including sex) very early in pregnancy, and there is no denying that it offers valuable opportunities for pregnant women, particularly those at high risk of having a child with severe genetic disorders or seeking an alternative to invasive prenatal testing. Nonetheless, the ethical, legal and social implications (ELSI) include multiple aspects of informed decision-making, which can entail risks for the individual right to procreative autonomy, in addition to the potential threats posed by sex-selective termination of pregnancy (in light of the information about fetal sex within the first trimester), and the stigmatization ...
Qualifying choice: ethical reflection on the scope of prenatal screening
Medicine, Health Care and Philosophy, 2016
In the near future developments in non-invasive prenatal testing (NIPT) may soon provide couples with the opportunity to test for and diagnose a much broader range of heritable and congenital conditions than has previously been possible. Inevitably, this has prompted much ethical debate on the possible implications of NIPT for providing couples with opportunities for reproductive choice by way of routine prenatal screening. In view of the possibility to test for a significantly broader range of genetic conditions with NIPT, the European Society of Human Genetics (ESHG) and American Society of Human Genetics (ASHG) recommend that, pending further debate, prenatal screening for reproductive choice should only be offered where concerning serious congenital conditions and childhood disorders. In support of this recommendation, the ESHG and ASHG discuss a number of ethical issues on which they prompt further debate: the informational privacy of the future child, the trivialization of abortion, the risk of information overload, and issues of distributive justice. This paper responds to this call with further reflection on each ethical issue and how it relates to the moral justification of providing couples with opportunities for meaningful reproductive choice. The paper concludes that whilst there may be good reasons for qualifying the scope of any unsolicited prenatal screening offer to serious congenital conditions and childhood disorders, if prenatal screening is justified for providing couples with opportunities for meaningful reproductive choice, then health services may have obligations to empower couples with the same opportunity where concerning other conditions.
Non-invasive prenatal testing: ethics and policy considerations
Journal of obstetrics and gynaecology Canada : JOGC = Journal d'obstétrique et gynécologie du Canada : JOGC, 2014
New technologies analyzing fetal DNA in maternal blood have led to the wide commercial availability of non-invasive prenatal testing (NIPT). We present here for clinicians the ethical and policy issues related to an emerging practice option. Although NIPT presents opportunities for pregnant women, particularly women who are at increased risk of having a baby with an abnormality or who are otherwise likely to access invasive prenatal testing, NIPT brings significant ethics and policy challenges. The ethical issues include multiple aspects of informed decision-making, such as access to counselling about the possible results of the test in advance of making a decision about participation in NIPT. Policy considerations include issues related to offering and promoting a privately available medical strategy in publicly funded institutions. Ethics and policy considerations merge in NIPT with regard to sex selection and support for persons living with disabilities.
2020
This dissertation is an ethnographic and qualitative study of how healthcare organizations construct and enact policies on the use of new prenatal technologies, and how such policies construct the context for patients' decision-making. Specifically, it examines how the systems that organizations create for new technologies shape the roles of women in motherhood and pregnancy. Using qualitative methods, the dissertation examines how one private California healthcare organization constructed policies regarding a new prenatal genetic test: non-invasive prenatal screening (NIPT) using cell free DNA.1 The rapid uptake of NIPT since 2013 has led to organizational upheaval as healthcare administrators struggle to categorize these new tests, which blends the ease of basic blood screening most women have been offered for years (just a blood draw) with claims of diagnostic-level accuracy (99% for the condition of Down Syndrome), allowing women to forego an invasive procedure like amniocentesis. The study ethnographically traces the process of policy creation and its impact on the ground by (1) observing how a policy committee dedicated to moving NIPT from a Genetics department at a regional healthcare organization to its Obstetrics department made new policies on NIPT use, and the (2) observing the impact of these new NIPT policies on "the ground" at local Obstetrics clinics. Little research has examined the process of policy-making for patient education. This study builds on literature on the constitutive nature of law and policy (Sarat and Kearns 1993) to show how organizational policies can constitute what technology means: the roles, responsibilities and identities of organizational personnel and those who use their services (e.g. women who are pregnant). More than simply processing patients who come through the door, organizational policies, like law, redefine who patients are, and what they experience both empirically and normatively. This dissertation studies how in this process institutional logics construct new risks and responsibilities for women while pregnant.
Non-invasive prenatal testing: ethical issues explored
European Journal of Human Genetics, 2009
This paper explores the ethical implications of introducing non-invasive prenatal diagnostic tests (NIPD tests) in prenatal screening for foetal abnormalities. NIPD tests are easy and safe and can be performed early in pregnancy. Precisely because of these features, it is feared that informed consent may become more difficult, that both testing and selective abortion will become 'normalized', and that there will be a trend towards accepting testing for minor abnormalities and non-medical traits as well. In our view, however, the real moral challenge of NIPD testing consists in the possibility of linking up a technique with these features (easy, safe and early) with new genomic technologies that allow prenatal diagnostic testing for a much broader range of abnormalities than is the case in current procedures. An increase in uptake and more selective abortions need not in itself be taken to signal a thoughtless acceptance of these procedures. However, combining this with considerably enlarging the scope of NIPD testing will indeed make informed consent more difficult and challenge the notion of prenatal screening as serving reproductive autonomy. If broad NIPD testing includes later-onset diseases, the 'right not to know' of the future child will become a new issue in the debate about prenatal screening. With regard to the controversial issue of selective abortion, it may make a morally relevant difference that after NIPD testing, abortion can be done early. A lower moral status may be attributed to the foetus at that moment, given the dominant opinion that the moral status of the foetus progressively increases with its development.
Non-Invasive Prenatal Testing: Review of Ethical, Legal and Social Implications
Non-invasive prenatal testing (NIPT) using cell-free fetal DNA (cffDNA) from maternal blood has recently entered clinical practice in many countries, including Canada. This test can be performed early during pregnancy to detect Down syndrome and other conditions. While NIPT promises numerous benefits, it also has challenging ethical, legal and social implications (ELSI). This paper reviews concerns currently found in the literature on the ELSI of NIPT. We make four observations. First, NIPT seems to exacerbate some of the already existing concerns raised by other prenatal tests (amniocentesis and maternal serum screening) such as threats to women's reproductive autonomy and the potential for discrimination and stigmatization of disabled individuals and their families. This may be due to the likely upcoming large scale implementation and routinization of NIPT. Second, the distinction between NIPT as a screening test (as it is currently recommended) and as a diagnostic test (potentially in the future), has certain implications for the ELSI discussion. Third, we observed a progressive shift in the literature from initially including mostly conceptual analysis to an increasing number of empirical studies. This demonstrates the contribution of empirical bioethics approaches as the technology is being implemented into clinical use. Finally, we noted an increasing interest in equity and justice concerns regarding access to NIPT as it becomes more widely implemented. Mots clés Keywords test prénatal non-invasif (TPNI), enjeux éthiques, légaux et sociaux (ELS), autonomie reproductive, consentement éclairé, interruption de grossesse, discrimination, attitudes eugéniques, implantation du TPNI non-invasive prenatal testing (NIPT), ethical legal and social issues (ELSI), reproductive autonomy, informed
ESHRE Task Force on Ethics and Law 14: Equity of access to assisted reproductive technology
Human Reproduction, 2008
Justice and access are among the most urgent questions for medically assisted reproduction. This paper analyses this question not only for people suffering from infertility, but also for people who need assistance to prevent the birth of a child with a specific genetic disorder. Based on the impact of not being able to have a child on the quality of life of a person, the position is defended that infertility treatment should be at least partially reimbursed. Simultaneously, the medical professionals have an obligation towards their patients and the health care system to bring down the costs as far as reasonably possible.
Ethical Practice in Prenatal Screening - Can Informed Consent Deliver
As the technological capacity to diagnose certain conditions prenatally expands, and more asymptomatic women are exposed to routine forms of prenatal screening, increasing emphasis is being placed on the garnering of informed consent within existing testing regimes to confer ethical legitimisation to this routine medical intervention. But while the garnering of informed consent has been incorporated into prenatal routines, recent studies show that for most women the purpose, practicalities and potential outcomes of the tests they have 'consented' to are poorly understood. Indeed most have simply followed the prescribed normative pathway without question. These findings contradict assertions of 'informed' engagement and thus cast doubt on the ethical validity of the currently accepted protocols. Closer consideration of the underlying assumptions of autonomy, on which informed consent is based reveals that the individualistic notions embedded do not reflect the relational way in which people interact. When applied in a context that offers few educational opportunities to become truly informed and which is unresponsive to the social, institutional and personal constraints experienced, the mere layering of 'informed consent' onto existing, unchallenged regimes is failing to achieve ethically coherent outcomes. Clearly, the current situation is proving to be an inadequate platform from which to build ethically sensitive responses to the complex ethical issues at stake in an increasingly technological world. With recent history of antenatal care showing how quickly new technologies are embraced often before their clinical or societal implications are clear, ensuring ethically responsive practices into the 21 st century demands further consideration now, with a re-thinking of how genuinely informed consent may be achieved.