Unjustified: The Imbalance of Information and Funding With Noninvasive Prenatal Screening

W.Leach, Mark

doi:10.1080/23294515.2014.993100

Cited by 6 publications

(5 citation statements)

References 35 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…These findings are consistent with another recent study that found counselling and education resources about cfDNA screening are not being offered as often as the screen itself is offered, in spite of professional society guidelines to the contrary [39]. Indeed, in a recent survey, more than 80% of practicing obstetric care providers reported lack of time as a barrier to counseling patients about cfDNA screening [22].…”

Section: Discussionsupporting

confidence: 87%

“I think we’ve got too many tests!”: Prenatal providers’ reflections on ethical and clinical challenges in the practice integration of cell-free DNA screening

Gammon

Kraft

Michie

et al. 2016

Ethics, Medicine and Public Health

View full text Add to dashboard Cite

Background The recent introduction of cell-free DNA-based non-invasive prenatal screening (cfDNA screening) into clinical practice was expected to revolutionize prenatal testing. cfDNA screening for fetal aneuploidy has demonstrated higher test sensitivity and specificity for some conditions than conventional serum screening and can be conducted early in the pregnancy. However, it is not clear whether and how clinical practices are assimilating this new type of testing into their informed consent and counselling processes. Since the introduction of cfDNA screening into practice in 2011, the uptake and scope have increased dramatically. Prenatal care providers are under pressure to stay up to date with rapidly changing cfDNA screening panels, manage increasing patient demands, and keep up with changing test costs, all while attempting to use the technology responsibly and ethically. While clinical literature on cfDNA screening has shown benefits for specific patient populations, it has also identified significant misunderstandings among providers and patients alike about the power of the technology. The unique features of cfDNA screening, in comparison to established prenatal testing technologies, have implications for informed decision-making and genetic counselling that must be addressed to ensure ethical practice. Objectives This study explored the experiences of prenatal care providers at the forefront of non-invasive genetic screening in the United States to understand how this testing changes the practice of prenatal medicine. We aimed to learn how the experience of providing and offering this testing differs from established prenatal testing methodologies. These differences may necessitate changes to patient education and consent procedures to maintain ethical practice. Methods We used the online American Congress of Obstetricians and Gynecologists Physician Directory to identify a systematic sample of five prenatal care providers in each U.S. state and the District of Columbia. Beginning with the lowest zip code in each state, we took every fifth name from the directory, excluding providers who were retired, did not currently practice in the state in which they were listed, or were not involved in a prenatal specialty. After repeating this step twice and sending a total of 461 invitations, 37 providers expressed interest in participating, and we completed telephone interviews with 21 providers (4.6%). We developed a semi-structured interview guide including questions about providers’ use of and attitudes toward cfDNA screening. A single interviewer conducted and audio-recorded all interviews by telephone, and the interviews lasted approximately 30 minutes each. We collaboratively developed a codebook through an iterative process of transcript review and code application, and a primary coder coded all transcripts. Results Prenatal care providers have varying perspectives on the advantages of cfDNA screening and express a range of concerns regarding the implementation of cfDNA screening in practice. ...

show abstract

Section: Discussionsupporting

confidence: 87%

“I think we’ve got too many tests!”: Prenatal providers’ reflections on ethical and clinical challenges in the practice integration of cell-free DNA screening

Gammon

Kraft

Michie

et al. 2016

Ethics, Medicine and Public Health

View full text Add to dashboard Cite

show abstract

“…As Leach (2015) points out in his analysis, this decision-making process is inhibited by the imbalance in resources devoted to the technical accomplishments of new prenatal tests versus the education and context needed to implement them successfully. While considerable time and physician resources are employed in the development and distribution of NIPT tests, and in convincing other providers of their value, there is little attention to educating providers on the very real psychosocial problems that NIPT’s technical advancements do nothing to allay.…”

Section: Informed Decision Makingmentioning

confidence: 99%

Old Questions, New Paradigms: Ethical, Legal, and Social Complications of Noninvasive Prenatal Testing

Michie

Allyse

2015

AJOB Empirical Bioethics

View full text Add to dashboard Cite

“…However, our extensive work in seeking out PAGs has shed light on the relatively small size of this sector overall, especially in relation to the rapidly burgeoning prenatal genetic testing industry. Laboratories offering prenatal genetic testing have not historically offered commensurate support to organizations for parents receiving this information, either financially or even through informational referrals (Skotko et al 2019;Meredith et al 2016;Leach 2015). Our work sheds additional light on the ethical implications of the widespread offer of prenatal genetic screening without sufficient attention to and funding for post-screening support, which has been noted in other literature (Michie 2020;Meredith et al 2022).…”

Section: Prenatal Support For Familiesmentioning

confidence: 64%

“…Of the resources mentioned by participants, only a few are available in a wide range of languages: most notably, those provided by the Lettercase National Center for Prenatal and Postnatal Resources (lettercase.org) and Unique (rarechromo.org). These limitations may be partially due to financial constraints; many PAGs, especially those supporting rarer conditions with smaller constituencies, receive limited, if any, external funding (Leach 2015;Meredith et al 2016). Active measures are beginning to address these concerns, including diversifying funding efforts to support additional languages and the creation of sub-groups to meet needs, such as the recently formed Black Down Syndrome Association (blackdownsyndrome.org).…”

Section: Unmet Needs Of the Parent Communitymentioning

confidence: 99%

Never “totally prepared”: Support groups on helping families prepare for a child with a genetic condition

et al. 2023

View full text Add to dashboard Cite

A rapid increase in the reach and breadth of prenatal genetic screening and testing has led to an expanding need for prenatal support of families receiving this genetic information. As part of a larger study investigating prenatal preparation for a child with a genetic condition, we interviewed representatives of patient advocacy groups (PAGs) who support parents postdiagnosis. Groups supporting families with Down syndrome were often local or regional, while other groups were often national or international in scope. Groups varied in their willingness or ability to support families prior to making a pregnancy continuation decision, and participants reflected on ways they addressed these needs with individual counseling and referrals, if needed. Participants described supporting parents with information about conditions and a range of lived experiences for families, while referring families to healthcare professionals for technical questions and additional medical needs. PAGs also prioritized connecting parents experiencing a new diagnosis with other families for peer support and community-building, both in person and on social media. Participants discussed limitations, such as a lack of racially-concordant support, ability to offer resources in languages other than English, and a lack of funding to meet the expressed needs of families post-diagnosis. Overall, participants emphasized that the parenting experience of each child is unique, irrespective of a genetic diagnosis, an experience for which parents can never be "totally prepared."

show abstract

Unjustified: The Imbalance of Information and Funding With Noninvasive Prenatal Screening

Cited by 6 publications

References 35 publications

“I think we’ve got too many tests!”: Prenatal providers’ reflections on ethical and clinical challenges in the practice integration of cell-free DNA screening

“I think we’ve got too many tests!”: Prenatal providers’ reflections on ethical and clinical challenges in the practice integration of cell-free DNA screening

Old Questions, New Paradigms: Ethical, Legal, and Social Complications of Noninvasive Prenatal Testing

Never “totally prepared”: Support groups on helping families prepare for a child with a genetic condition

Contact Info

Product

Resources

About