Information preferences of high literacy pregnant women regarding informed consent models for genetic carrier screening

Ormond, Kelly E.; Banuvar, S.; Daly, Avril; Iris, Madelyn; Minogue, J.; Elias, Sherman

doi:10.1016/j.pec.2008.09.020

Cited by 28 publications

(30 citation statements)

References 21 publications

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“…Guidelines and policy statements have given some direction as how to handle the consent process and form (Grody et al 2013;Edwards et al 2015), which do not necessarily reflect users' preferences. Empirical studies (focus group and survey studies) inquiring about patients' preferences for information to constitute consent forms for expanded carrier screening showed their need for comprehensive information about the test and diseases being tested (Ormond et al 2007;Ormond et al 2009). …”

Section: Discussionmentioning

confidence: 99%

“…Ready and colleagues assessed knowledge and attitudes toward expanded screening panels of participants in American Society for Reproductive Medicine 2010 and American College of Obstetricians and Gynecologists 2011 Annual Meetings (Ready et al 2012), and lastly Schoen et al discovered discrepancy in expanded genetic screening usage between private and public patients in New Jersey (Schoen et al 2014). What information to include in an informed consent for prenatal genetic screening was investigated qualitatively and quantitatively among pregnant women (Ormond et al 2007(Ormond et al , 2009). …”

Section: Introductionmentioning

confidence: 99%

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Swedish healthcare providers’ perceptions of preconception expanded carrier screening (ECS)—a qualitative study

2016

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Reproductive autonomy, medicalization, and discrimination against disabled and parental responsibility are the main ongoing ethical debates concerning reproductive genetic screening. To examine Swedish healthcare professionals' views on preconception expanded carrier screening (ECS), a qualitative study involving academic and clinical institutions in Sweden was conducted in September 2014 to February 2015. Eleven healthcare professionals including clinicians, geneticists, a midwife, and a genetic counselor were interviewed in depth using a semi-structured interview guide. The questionnaire was constructed after reviewing the main literature and meetings with relevant healthcare providers. The interviews were recorded, transcribed verbatim, and content analyzed for categories and subcategories. Participants nurtured many ethical and non-ethical concerns regarding preconception ECS. Among the ethical concerns were the potential for discrimination, medicalization, concerns with prioritization of healthcare resources, and effects on reproductive freedom. The effects of implementation of preconception ECS, its stakeholders, regulations, and motivation are some of non-ethical concerns. These concerns, if not addressed, may affect the uptake and usage of carrier screening within Swedish healthcare system. As this is a qualitative study with a small non-random sample size, the findings cannot be generalized. The participants had little to no working experience with expanded screening panels. Moreover, the interviews were conducted in English, a second language for the participants, which might have limited the expression of their views. However, the authors claim that the findings may be pertinent to similar settings in other Scandinavian countries.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Swedish healthcare providers’ perceptions of preconception expanded carrier screening (ECS)—a qualitative study

2016

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“…The goal of the current study is to expand upon the work of Ormond et al (2007Ormond et al ( , 2009) by investigating the attitudes of a more diverse population, which includes males, and by assessing informational needs for multiplex genetic carrier screening rather than screening for a small number of diseases. The primary objective of this study is to assess preferences regarding the amount and type of information presented as part of a generic informed consent process for multiplex genetic carrier screening.…”

Section: Purpose Of the Studymentioning

confidence: 99%

“…These scenarios were directly modeled after the ones developed by Ormond et al (2009) with permission; however, given our target study population, some of the language was simplified. Also, the information about the carrier test was modified to reflect the scope of multiplex carrier testing in a broad (generic) way.…”

Section: Instrumentationmentioning

confidence: 99%

“…However, to implement such a model it is first important to identify what patients need to know to make an informed decision about carrier screening. Ormond and colleagues investigated informational needs with regard to carrier testing amongst highly literate pregnant women, via focus groups (Ormond et al 2007) and then via survey (Ormond et al 2009). Women in both studies were presented with a detailed consent scenario that was modeled after the information typically provided in a genetic counseling session (comprehensive model), and a brief scenario (generic model).…”

Section: Introductionmentioning

confidence: 99%

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Comparison of Informed Consent Preferences for Multiplex Genetic Carrier Screening among a Diverse Population

Reeves

Trepanier

2015

Journal of Genetic Counseling

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Multiplex genetic carrier screening is increasingly being integrated into reproductive care. Obtaining informed consent becomes more challenging as the number of screened conditions increases. Implementing a model of generic informed consent may facilitate informed decision-making. Current Wayne State University students and staff were invited to complete a web-based survey by blast email solicitation. Participants were asked to determine which of two generic informed consent scenarios they preferred: a brief versus a detailed consent. They were asked to rank the importance of different informational components in making an informed decision and to provide demographic information. Comparisons between informational preferences, demographic variables and scenario preferences were made. Six hundred ninety three participants completed the survey. When evaluating these generic consents, the majority preferred the more detailed consent (74.5%), and agreed that it provided enough information to make an informed decision (89.5%). Those who thought it would be more important to know the severity of the conditions being screened (p = .002) and range of symptoms (p = .000) were more likely to prefer the more detailed consent. There were no significant associations between scenario preferences and demographic variables. A generic consent was perceived to provide sufficient information for informed decision making regarding multiplex carrier screening with most preferring a more detailed version of the consent. Individual attitudes rather than demographic variables influenced preferences regarding the amount of information that should be included in the generic consent. The findings have implications for how clinicians approach providing tailored informed consent.

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Development and assessment of educational materials for spinal muscular atrophy carrier screening in the Plain community

Eichten,

Kuhl,

Baker

et al. 2024

Journal of Genetic Counseling

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Spinal muscular atrophy (SMA) has been reported in both Amish and Mennonite (Plain) communities, and a higher incidence has been observed in certain Mennonite communities compared to the general population. There are several therapies for SMA, but all are most effective in pre‐symptomatic newborns. To identify couples from the Wisconsin Plain community who are most likely to have a child with SMA, carrier screening is offered via mailed kits with at‐home specimen collection. Our survey data about Plain families' perspectives on genetic testing suggest educational materials are needed for individuals providing informed consent with at‐home specimen collection. We therefore developed a Plain population‐specific educational trifold brochure about SMA carrier screening by incorporating existing medical education strategies and feedback from Plain community members and their health care providers. Along with the brochure, surveys were included in the kits to assess baseline knowledge about SMA carrier screening (“pre‐education”) as well as improvement in knowledge after reviewing the brochure and cultural appropriateness of the brochure (“post‐education”). Fifty‐five testing kits were distributed, and 26 survey pairs (pre‐ and post‐education) were returned and analyzed (response rate 47%). Respondents had high baseline knowledge with an average of 5 of 7 questions (71%) answered correctly on the pre‐education survey. Knowledge improved after reviewing the brochure as the average score increased to 6.5 of 7 questions (93%) answered correctly. Questions about risks of having an affected child after positive or negative carrier screening showed the most improvement from the pre‐education to post‐education surveys. Most respondents indicated the brochure was helpful, was easy to understand, and contained the right amount of information. Overall, incorporating elements of existing medical education strategies with feedback from the target population and stakeholders about appropriate language seems to be an effective method for creating beneficial, culturally responsive educational materials for the Plain population.

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Information preferences of high literacy pregnant women regarding informed consent models for genetic carrier screening

Cited by 28 publications

References 21 publications

Swedish healthcare providers’ perceptions of preconception expanded carrier screening (ECS)—a qualitative study

Swedish healthcare providers’ perceptions of preconception expanded carrier screening (ECS)—a qualitative study

Comparison of Informed Consent Preferences for Multiplex Genetic Carrier Screening among a Diverse Population

Development and assessment of educational materials for spinal muscular atrophy carrier screening in the Plain community

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