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Sex selection and non-invasive prenatal testing: A review of current practices, evidence, and ethical issues.

ABSTRACT: Non-invasive prenatal testing (NIPT) can determine the sex of the fetus very accurately and very early in gestation. There are concerns that the ease, timing, and accuracy of NIPT sex determination will facilitate sex-selective termination of pregnancy (TOP). Here, we review current practices, the evidence for a link between NIPT and sex-selective TOP, and associated ethical issues. Sex-selective TOP, usually motivated by son preference, has had serious demographic consequences in countries such as India and China. Currently, ultrasound is the primary method by which parents determine the sex of the fetus. The diffusion of ultrasound technology has had a direct impact on the rates of sex-selective TOP. Although NIPT is currently more costly, it is feasible that increased uptake of this technology could have a similar effect. Partly because NIPT is a relatively recent development in prenatal screening, there is little data on the impact of NIPT on sex selection practices. Evidence that NIPT is playing a role in sex-selective TOP remains largely anecdotal. Further research is required to assess and quantify TOP resulting from NIPT sex determination. The use of these technologies for sex selection raises a number of ethical issues, in addition to practical demographic consequences.

SUBMITTER: Bowman-Smart H

PROVIDER: S-EPMC7187249 | biostudies-literature | 2020 Mar

REPOSITORIES: biostudies-literature

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Sex selection and non-invasive prenatal testing: A review of current practices, evidence, and ethical issues.

Bowman-Smart Hilary H Savulescu Julian J Gyngell Christopher C Mand Cara C Delatycki Martin B MB

Prenatal diagnosis 20191010 4

Non-invasive prenatal testing (NIPT) can determine the sex of the fetus very accurately and very early in gestation. There are concerns that the ease, timing, and accuracy of NIPT sex determination will facilitate sex-selective termination of pregnancy (TOP). Here, we review current practices, the evidence for a link between NIPT and sex-selective TOP, and associated ethical issues. Sex-selective TOP, usually motivated by son preference, has had serious demographic consequences in countries such ...[more]

PMID: 31499588

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Project description:BACKGROUND:Non-Invasive Prenatal Testing (NIPT) is a technology which provides information about fetal genetic characteristics (including sex) very early in pregnancy by examining fetal DNA obtained from a sample of maternal blood. NIPT is a morally complex technology that has advanced quickly to market with a strong push from industry developers, leaving many areas of uncertainty still to be resolved, and creating a strong need for health policy that reflects women's social and ethical values. We approach the need for ethical policy-making by studying the use of NIPT and emerging policy in the province of Ontario, Canada. METHODS:Using an adapted version of constructivist grounded theory, we conducted interviews with 38 women who have had personal experiences with NIPT. We used an iterative process of data collection and analysis and a staged coding strategy to conduct a descriptive analysis of ethics issues identified implicitly and explicitly by women who have been affected by this technology. RESULTS:The findings of this paper focus on current ethical issues for women seeking NIPT, including place in the prenatal pathway, health care provider counselling about the test, industry influence on the diffusion of NIPT, consequences of availability of test results. Other issues gain relevance in the context of future policy decisions regarding NIPT, including funding of NIPT and principles that may govern the expansion of the scope of NIPT. These findings are not an exhaustive list of all the potential ethical issues related to NIPT, but rather a representation of the issues which concern women who have personal experience with this test. CONCLUSIONS:Women who have had personal experience with NIPT have concerns and priorities which sometimes contrast dramatically with the theoretical ethics literature. These findings suggest the importance of engaging patients in ethical deliberation about morally complex technologies, and point to the need for more deliberative patient engagement work in this area.

Project description:The field of public health includes a wide scope of activities and professional disciplines, ranging from sanitation, health protection, epidemiology, environmental health, financing, health promotion, including supervision, or the provision of clinical care. Each of these disciplines works in systems that face ethical dilemmas, making it important that public health workers have motivation to understand and practice within the ethical guidelines of their profession, thus making ethics an important component of training and practice. The dangers of ethical lapses are overwhelmingly apparent in the case of the Eugenics movement of the early 20th century which metamorphosed from forced sterilizations in many liberal democratic countries into mass murder of physically and mentally handicapped children and adults in Nazi Germany. Between 1939 and 1941, 180 thousand psychiatric patients along with an equivalent number of handicapped children and adults were killed in an organized extermination program in Germany by lethal gassing. This method was then applied to the industrialized murder or Holocaust of six million Jews and millions of other “untermenschen” (sub human) in the greatest genocide in human history. Shortly after World War II ended the Nuremberg Trials of Nazi war criminals were conducted including medical doctors, and some were executed for crimes against humanity. This was followed by the 1948 United Nations Declaration on Human Rights and by the World Medical Association’s Helsinki Declaration. Both are widely accepted as cornerstone documents—the latter specifically governing ethical standards related to human experimentation—and are revised regularly since being issued in 1964. But genocide has not disappeared, nor has unscrupulous experimentation such as the Tuskegee experiment on black Americans infected with syphilis and left untreated even after the availability of a cure, penicillin. Ethical standards are now required by “Helsinki Committees”—ethical review boards—in most medical facilities worldwide. Ethical frameworks have evolved in part due to bitter experience of ethical failures later recognized and affecting public health standards of practice. Future generations of public health leaders and staff will face many ethical issues such as mandatory immunization of health workers and school children, and assisted death of terminally ill patients.

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Sex selection and non-invasive prenatal testing: A review of current practices, evidence, and ethical issues.

Publications

Sex selection and non-invasive prenatal testing: A review of current practices, evidence, and ethical issues.

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