Knowledge and attitudes regarding expanded genetic carrier screening among women’s healthcare providers

Ready, Kaylene; Haque, Imran S.; Srinivasan, Balaji; Marshall, John R.

doi:10.1016/j.fertnstert.2011.11.007

Cited by 43 publications

(51 citation statements)

References 21 publications

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“…So far, a few studies have explored the attitudes of US health care providers with regard to EUCS. 12,27,28 To our knowledge, this is the first study examining the attitudes of health (policy) professionals and representatives of patient organisations within a European context. Moreover, contrary to previous research, this study explicitly focusses on the ethical dimension of EUCS rather than on practical implementation challenges.…”

Section: Discussionmentioning

confidence: 98%

Advantages of expanded universal carrier screening: what is at stake?

et al. 2016

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Section: Discussionmentioning

confidence: 98%

Advantages of expanded universal carrier screening: what is at stake?

et al. 2016

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“…Shickle and May (1989) found that general practitioners with better knowledge of communities at risk are more likely to support screening for hemoglobinopathies. Also, Ready et al (2012) who conducted a survey at the ASRM (American Society for Reproductive Medicine) meeting to determine the attitude and knowledge toward expanded genetic screening for recessive diseases among reproductive health care providers ascertained that, despite the positive attitude toward such screening, there were misperceptions about recessive inheritance, confidentiality, and insurance discrimination necessitating for education. Given that lack of knowledge constitutes an important concern, we can assume that the need for education will increase if screening for multiple diseases would be offered.…”

Section: Discussionmentioning

confidence: 99%

Attitudes of health care professionals toward carrier screening for cystic fibrosis. A review of the literature

2012

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Recent technological developments in molecular genetics facilitate the large-scale detection of inherited genetic disorders and allow an increasing number of genetic conditions to be screened for (American College of Medical Genetics 2012). This technological evolution creates the background which makes reflection necessary about the desirability to offer community-based (preconception) carrier screening in the healthcare system. A positive attitude of potential providers is vital to the success of a screening program. Therefore, the objective of this article is to elaborate a review of the attitudes of healthcare professionals toward carrier screening. Examination of existing carrier screening programs could provide such information. The literature review will be focused on the attitudes toward carrier screening for cystic fibrosis (CF). The databases Pubmed and Web of Science, as well as the interface Google Scholar, were searched using the keywords for the period 1990-2011. Studies were selected if they were published in a peer-reviewed journal in English and described the attitudes of potential providers toward carrier screening. Eleven studies were retrieved describing the attitudes toward carrier screening for CF. In total, seven studies reported attitudes toward the best time for carrier screening; four studies described opinions toward the best setting to offer CF carrier screening; six studies investigated the willingness to be involved in a carrier screening program, and in total 11 articles reported the concerns about offering carrier screening. Ten papers described a general attitude toward carrier screening. We can conclude that health care providers state willingness to be involved in a carrier screening program, but there is need for appropriate education as well as adequate support given the time constraints already present in consultation. The prospect of an increasing number of genetic disorders for which screening becomes possible, and the potential increasing demand for such screening in the future calls for the need for further debate on the desirability of carrier screening and relevant questions such as the conditions screened, the providers involved, the information provision, and counseling.

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“…Examples are Cho and colleagues who examined genetic professionals' views on reproductive expanded carrier screening in six academic institutes in USA (Cho et al 2013). 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%

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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Knowledge and attitudes regarding expanded genetic carrier screening among women’s healthcare providers

Cited by 43 publications

References 21 publications

Advantages of expanded universal carrier screening: what is at stake?

Advantages of expanded universal carrier screening: what is at stake?

Attitudes of health care professionals toward carrier screening for cystic fibrosis. A review of the literature

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

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