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

Kelly, Susan E.; Farrimond, Hannah

doi:10.1159/000331254

Cited by 66 publications

(95 citation statements)

References 76 publications

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“…Overall, NIPT was viewed as a positive advancement in prenatal care predominantly because it offers an early and more accurate approach than current screening tests, thereby providing more certainty and reducing the need for risky invasive procedures with the associated anxiety. These findings chime with other studies focusing on women and the public's views [15,16,17,19] as well as studies looking at the use of NIPT for sex-linked conditions [22,23]. Nevertheless, women's initial enthusiasm was often tempered when reflecting on potential drawbacks, which included pressure to test, routinisation and societal impact.…”

Section: Discussionsupporting

confidence: 65%

“…Before implementation, it is important to evaluate service user views and preferences to ensure that when the test is introduced the needs of all stakeholders are met. So far, a small number of studies evaluating stakeholder views of NIPT for Down's syndrome have been conducted [15,16,17,18,19]. However, no previous qualitative studies have examined the opinions of pregnant women with a range of different experience of Down's syndrome screening and diagnosis in the UK.…”

Section: Introductionmentioning

confidence: 99%

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Non-Invasive Prenatal Testing for Down's Syndrome: Pregnant Women's Views and Likely Uptake

Lewis

Silcock²,

Chitty

2013

Public Health Genomics

118

183

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Background: The introduction of non-invasive prenatal testing (NIPT) for Down's syndrome into routine state-funded antenatal care in the UK is approaching. Methods: We conducted qualitative one-to-one interviews with 40 pregnant women to ascertain their views on using NIPT for Down's syndrome. Results: The overwhelming majority of women viewed NIPT as a positive advancement in prenatal care, highlighting numerous practical and psychological advantages of a safe test that was highly accurate and could be conducted early in pregnancy. Concerns raised were that testing could become routinised, and that pressure to test might occur with women feeling less justified in declining a blood test that is available and offered by trusted health professionals; the impact on the disabled community and stigma for women who decline testing was also noted. Nevertheless, the vast majority of women said they would be likely to use NIPT, including half of the women who currently decline screening. Women's preference was for pre- and post-test counselling to be delivered by a midwife. Conclusion: The successful introduction of NIPT into routine prenatal care will require guidelines and counselling strategies which ensure women are offered this test in a way which safeguards informed consent.

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Section: Discussionsupporting

confidence: 65%

Section: Introductionmentioning

confidence: 99%

Non-Invasive Prenatal Testing for Down's Syndrome: Pregnant Women's Views and Likely Uptake

Lewis

Silcock²,

Chitty

2013

Public Health Genomics

118

183

View full text Add to dashboard Cite

show abstract

“…[17][18][19] Here, we evaluate the service users' direct experience of using NIPD for sex-linked genetic conditions and have identified an overwhelmingly positive attitude of participants towards this technology as well as a number of practical and psychological benefits of a test that is easy to perform, is offered relatively early in pregnancy and has no risk of miscarriage. A number of disadvantages were raised.…”

Section: Discussionmentioning

confidence: 99%

“…This issue was also identified in a study looking at public attitudes towards this technology. 19 In the UK, NIPD for fetal sex determination is only used for clinical indications and this is tightly regulated by NHS service laboratories.…”

Section: Discussionmentioning

confidence: 99%

Non-invasive prenatal diagnosis for fetal sex determination: benefits and disadvantages from the service users’ perspective

et al. 2012

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Prenatal fetal sex determination is clinically indicated for women who are at risk of having a child with a serious genetic disorder affecting a particular sex. Ultrasound has been the traditional method used, but early fetal sex determination using non-invasive prenatal diagnosis (NIPD) can now be performed using cell-free fetal DNA in maternal plasma. The study aim was to assess the views and experiences of service users who had used NIPD for fetal sex determination. In this paper, we report on the perceived benefits and disadvantages. A qualitative approach using semi-structured interviews was used. A total of 44 participants (38 women and 6 partners of participating women) were recruited. Participants' views and experiences of NIPD were overwhelmingly positive. Concerning benefits over traditional methods, three themes emerged: (1) technical aspects of technology; (2) timing; and (3) enhanced decision-making. Practical advantages of NIPD included avoiding miscarriage, and there were a number of psychological advantages associated with timing such as perceived control, early re-engagement, normalization of pregnancy and peace of mind. Participants also valued NIPD as it enabled a stepwise approach to decisionmaking. A number of disadvantages were discussed including concerns about social sexing and increased bonding at a time in pregnancy when miscarriage risk is high. However, participants felt these were fairly minor in comparison with the advantages of NIPD. Until definitive genetic diagnosis using NIPD is available, NIPD for fetal sex determination is perceived as a good interim measure with a number of notable advantages over traditional methods.

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“…21,22 However, the ease with which the test can be performed has made some women, health professionals and members of the general public concerned that parents might consent to the test without sufficient consideration of the consequences. 23,24 A recent position statement on NIPT published by the National Society of Genetic Counsellors 25 cited the need for both appropriate counselling to accompany the test and the need for informed consent. This is particularly pertinent to the NIPT approach, as women and health professionals seem to vary in their attitudes towards this mode of testing 26,27 and ease of testing may increase use of direct-to-consumer testing.…”

mentioning

confidence: 99%

Offering prenatal diagnostic tests: European guidelines for clinical practice

et al. 2013

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For over four decades, it has been possible to offer prenatal diagnostic testing for fetal abnormalities. Prenatal testing is now available for a wide range of monogenic disorders as well as chromosomal abnormalities and should be provided within the ethical framework of informed consent and autonomous choice. However, there are no published guidelines for health professionals from varied disciplines who offer prenatal diagnosis (PND) in a range of possible settings including departments of maternity, obstetrics and clinical genetics. We used an Expert Group technique to develop a set of guidelines for provision of prenatal diagnostic services. Thirteen European health professionals, all experts in PND, participated in a workshop to develop the guidelines, which were then subjected to a wide consultation process. The objective of PND was defined as providing prenatal diagnostic testing services (for genetic conditions) that enable families to make informed choices consistent with their individual needs and values and which support them in dealing with the outcome of such testing. General principles, logistical considerations, clinical care and counselling topics are all described and are equally applicable to invasive and noninvasive testing. These guidelines provide a framework for ethical clinical care; however, they are flexible enough to enable practitioners to adapt them to their particular setting. Ideally, an individualised approach to each family is required to ensure autonomous choice and informed consent regarding prenatal diagnostic testing within the local ethical and legal framework.

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

Cited by 66 publications

References 76 publications

Non-Invasive Prenatal Testing for Down's Syndrome: Pregnant Women's Views and Likely Uptake

Non-Invasive Prenatal Testing for Down's Syndrome: Pregnant Women's Views and Likely Uptake

Non-invasive prenatal diagnosis for fetal sex determination: benefits and disadvantages from the service users’ perspective

Offering prenatal diagnostic tests: European guidelines for clinical practice

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