Practical and Ethical Considerations of Noninvasive Prenatal Diagnosis

Benn, Peter; Chapman, Audrey R.

doi:10.1001/jama.2009.707

Cited by 66 publications

(52 citation statements)

References 11 publications

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“…14,15 Health professionals are also more likely to be aware of the growing body of literature, exploring the ethical and psychosocial concerns associated with NIPD. [26][27][28][29][30] Consequently, the value placed on accuracy by health professionals as compared with women in this study may, at least in part, be due to differences in their existing knowledge and concerns about the implementation of NIPD. To an extent, this view is supported by the observation that, in contrast to women recruited through antenatal clinics, those recruited through ARC, all of whom had experience of adverse results in a previous pregnancy and hence prior experience, had a greater preference for accuracy and a test that gave more information.…”

Section: Discussionmentioning

confidence: 94%

“…34 For many women, the miscarriage risk associated with invasive testing is a psychological barrier to diagnostic testing for Down syndrome. 27,35 If the miscarriage risk is removed, women may feel more inclined to have a test. 35 In addition, health professionals have been found to view NIPD more like screening than an invasive diagnostic test, suggesting that they may not provide the same level of information and counseling as they would for an invasive diagnostic test.…”

Section: Discussionmentioning

confidence: 99%

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Women’s and health professionals’ preferences for prenatal tests for Down syndrome: a discrete choice experiment to contrast noninvasive prenatal diagnosis with current invasive tests

Hill

Fisher²,

Chitty

et al. 2012

Genetics in Medicine

117

137

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Original research articlePurpose: To compare the preferences of women and health professionals for key attributes of noninvasive prenatal diagnosis for Down syndrome relative to current invasive tests. methods:A questionnaire incorporating a discrete choice experiment was used to obtain participants' stated preference for diagnostic tests that varied according to four attributes: accuracy, time of test, risk of miscarriage, and provision of information about Down syndrome only or Down syndrome and other conditions. Women and health professionals were recruited from five maternity services in England and a patient support group. Results:Questionnaires from 335 women and 181 health professionals were analyzed. Safe tests, conducted early in pregnancy, with high accuracy and information about Down syndrome and other conditions were preferred. The key attribute affecting women's preferences for testing was no risk of miscarriage, whereas for health professionals it was accuracy.conclusions: Policies for implementing noninvasive prenatal diagnosis must consider the differences between women's and health professionals' preferences to ensure the needs of all stakeholders are met. Women's strong preference for tests with no risk of miscarriage demonstrates that consideration for safety of the fetus is paramount in decision making. Effective pretest counseling is therefore essential to ensure women understand the possible implications of results. 2012:14(11):905-913 Genet Med

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Section: Discussionmentioning

confidence: 94%

Section: Discussionmentioning

confidence: 99%

Women’s and health professionals’ preferences for prenatal tests for Down syndrome: a discrete choice experiment to contrast noninvasive prenatal diagnosis with current invasive tests

Hill

Fisher²,

Chitty

et al. 2012

Genetics in Medicine

117

137

View full text Add to dashboard Cite

show abstract

“…Several analysts have sought to determine whether NIPD raises new social and ethical issues, in a growing number of publications [1,33,36,46,47,48,49,50,51,52]. While acknowledging the advantages of NIPD over current practices in terms of earlier and safer testing, most identify social and ethical concerns beyond those identified with current prenatal testing practices.…”

Section: Discussionmentioning

confidence: 99%

Non-Invasive Prenatal Genetic Testing: A Study of Public Attitudes

Kelly

Farrimond

2011

Public Health Genomics

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Background/Objectives: Non-invasive prenatal genetic diagnostic (NIPD) tests are being developed using cell-free fetal DNA in the maternal circulation. NIPD tests avoid or reduce the need for invasive diagnostic procedures for conditions like Down syndrome. Discussion of ethical and social implications of these techniques is increasing. We report findings from a study of public attitudes relevant to the introduction of NIPD. A key aim was to examine the range of attitudes relevant to NIPD within a diverse sample. Methods: Qualitative analysis of written free text ‘first responses’ to a written neutral description of NIPD as part of a Q-methodology study conducted with a purposive sample of the UK population (n = 71). Results: The majority (63%) of respondents described their first response as positive. However, respondents displayed ambivalence, expressing positive views of individual/medical rationale for NIPD and unease concerning public health rationale and societal implications. Unease related to eugenic reasoning underlying existing prenatal testing, ‘too much control’ in reproduction, commercial provision, information and support requirements for expanded testing, and limiting the use of testing. Conclusions: These findings suggest that regulating and monitoring commercial provision of NIPD services, and monitoring introduction and clinical use, are a public preference.

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“…Of these tests, those that can give a woman or couple a definitive result (that is, virtual certainty about the presence or absence of a particular fetal abnormality) 1 are currently invasive and therefore carry a small but significant risk of miscarriage. However there is a new technology emerging, non-invasive prenatal diagnosis (NIPD), which would allow women to obtain definitive information about their fetus without the risk of miscarriage.…”

Section: Introductionmentioning

confidence: 99%

“…[9,14] Professional deliberations on this topic are less about the appropriateness of women giving consent per se; instead the focus is on how to ensure consent and choice are genuine and well-informed. Given there is evidence to suggest that informed decisionmaking procedures may be threatened by the introduction of the new technology of NIPD [17] and given the wider ethical context of this emerging technology, [1,2,10] it is timely to critically review the value of informed decision-making in prenatal testing and how this should impact decision-making procedures for NIPD.…”

Section: Introductionmentioning

confidence: 99%