Women’s perspectives on the ethical implications of non-invasive prenatal testing: a qualitative analysis to inform health policy decisions
Abstract 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 quic...
| Main Authors: | , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
BMC
2018-04-01
|
| Series: | BMC Medical Ethics |
| Subjects: | |
| Online Access: | http://link.springer.com/article/10.1186/s12910-018-0267-4 |
| _version_ | 1818205112968937472 |
|---|---|
| author | Meredith Vanstone Alexandra Cernat Jeff Nisker Lisa Schwartz |
| author_facet | Meredith Vanstone Alexandra Cernat Jeff Nisker Lisa Schwartz |
| author_sort | Meredith Vanstone |
| collection | DOAJ |
| description | Abstract 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. |
| first_indexed | 2024-12-12T03:51:58Z |
| format | Article |
| id | doaj.art-c03896d5529f481895b2010fefc32a9f |
| institution | Directory Open Access Journal |
| issn | 1472-6939 |
| language | English |
| last_indexed | 2024-12-12T03:51:58Z |
| publishDate | 2018-04-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Medical Ethics |
| spelling | doaj.art-c03896d5529f481895b2010fefc32a9f2022-12-22T00:39:22ZengBMCBMC Medical Ethics1472-69392018-04-0119111310.1186/s12910-018-0267-4Women’s perspectives on the ethical implications of non-invasive prenatal testing: a qualitative analysis to inform health policy decisionsMeredith Vanstone0Alexandra Cernat1Jeff Nisker2Lisa Schwartz3Department of Family Medicine, McMaster UniversityLife Sciences Program, McMaster UniversityDepartment of Obstetrics and Gynecology, Western UniversityCentre for Health Economics and Policy Analysis, McMaster UniversityAbstract 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.http://link.springer.com/article/10.1186/s12910-018-0267-4Non-invasive prenatal testingPrenatal screeningQualitative researchEthicsHealth policyPatient engagement |
| spellingShingle | Meredith Vanstone Alexandra Cernat Jeff Nisker Lisa Schwartz Women’s perspectives on the ethical implications of non-invasive prenatal testing: a qualitative analysis to inform health policy decisions BMC Medical Ethics Non-invasive prenatal testing Prenatal screening Qualitative research Ethics Health policy Patient engagement |
| title | Women’s perspectives on the ethical implications of non-invasive prenatal testing: a qualitative analysis to inform health policy decisions |
| title_full | Women’s perspectives on the ethical implications of non-invasive prenatal testing: a qualitative analysis to inform health policy decisions |
| title_fullStr | Women’s perspectives on the ethical implications of non-invasive prenatal testing: a qualitative analysis to inform health policy decisions |
| title_full_unstemmed | Women’s perspectives on the ethical implications of non-invasive prenatal testing: a qualitative analysis to inform health policy decisions |
| title_short | Women’s perspectives on the ethical implications of non-invasive prenatal testing: a qualitative analysis to inform health policy decisions |
| title_sort | women s perspectives on the ethical implications of non invasive prenatal testing a qualitative analysis to inform health policy decisions |
| topic | Non-invasive prenatal testing Prenatal screening Qualitative research Ethics Health policy Patient engagement |
| url | http://link.springer.com/article/10.1186/s12910-018-0267-4 |
| work_keys_str_mv | AT meredithvanstone womensperspectivesontheethicalimplicationsofnoninvasiveprenataltestingaqualitativeanalysistoinformhealthpolicydecisions AT alexandracernat womensperspectivesontheethicalimplicationsofnoninvasiveprenataltestingaqualitativeanalysistoinformhealthpolicydecisions AT jeffnisker womensperspectivesontheethicalimplicationsofnoninvasiveprenataltestingaqualitativeanalysistoinformhealthpolicydecisions AT lisaschwartz womensperspectivesontheethicalimplicationsofnoninvasiveprenataltestingaqualitativeanalysistoinformhealthpolicydecisions |