Exploring informed choice in the context of prenatal testing: findings from a qualitative study

Abstract

Purpose This study explored whether and how a sample of women made informed choices about prenatal testing for foetal anomalies; its aim was to provide insights for future health policy and service provision.Methods We conducted semi-structured interviews with 38 mothers in Ottawa, Ontario, all of whom had been offered prenatal tests in at least one pregnancy. Using the Multi-dimensional Measure of Informed Choice as a general guide to analysis, we explored themes relevant to informed choice, including values and knowledge, and interactions with health professionals.Results Many, but not all, participants seemed to have made informed decisions about prenatal testing. Values and knowledge were interrelated and important components of informed choice, but the way they were discussed differed from the way they have been presented in scientific literature. In particular, ÔvaluesÕ related to expressions of womenÕs moral views or ideas about Ôhow life should be livedÕ and ÔknowledgeÕ related to the ways in which women prioritized and interpreted factual information, through their own and othersÕ experiences and in Ôthinking throughÕ the personal implications of testing. While some women described non-directive discussions with health professionals, others perceived testing as routine or felt pressured to accept it.Conclusions Our findings suggest a need for maternity care providers to be vigilant in promoting active decision making about prenatal testing, particularly around the consideration of personal implications. Further development of measures of informed choice may be necessary to fully evaluate decision support tools and to determine whether prenatal testing programmes are meeting their objectives.

An easy test but a hard decision: ethical issues concerning non-invasive prenatal testing for autosomal recessive disorders

“…11 These principles apply to both invasive and non-invasive tests; however, there is some evidence to show that prenatal testing may be considered by parents as routine rather than optional. 12,13 There are also concerns that prenatal diagnosis itself can be viewed as 'eugenic' and discriminatory against people with disability. 14,15 While service users cite the earlier timing of the test and safety for the fetus 16 as major advantages of NIPD, health professionals were positive, but expressed reservations such as concerns about informed consent and potential 'routinisation' of a test that can be done on a 'simple' blood test.…”

Offering prenatal diagnostic tests: European guidelines for clinical practice

“…12 Furthermore, there is evidence that parents may not be aware that such tests are optional. In a qualitative study of 38 mothers who had undergone prenatal testing, Potter et al 14 found that some women believed they had not given informed consent, mainly because of their beliefs that the testing was a routine part of antenatal care. Authors of the same study found that many women made their decisions based on moral judgements related to their own values, interpreting the factual information provided through their own moral lens.…”

Are Adolescents’ decisions about Prenatal Screening for Down Syndrome Informed? A Controlled, Prospective Study

“…25 Patient autonomy, an underlying principle of informed choice, may be compromised if women feel pressure to accept the screening or if it is not presented as an individual choice. 17,24,26 Pregnant adolescents and younger women may be at particular risk of making non-informed decisions about prenatal screening. They may be more likely to be influenced by health care providers' advice and influence, and are more likely to be socio-economically disadvantaged than adults.…”